Aarskog Syndrome Parents Support Group httpwwwfamilyvillagewiscedulib_aarshtm AboutFace USA (For people with facial differences) httpwwwaboutfaceusaorg AboutFace International httpwwwaboutfaceinternationalorg httpaboutfaceca Abetalipoproteinemia (International) httpwwwabetalipoproteinemiaorg Accord Alliance (Disorders of Sexual Development) httpwwwaccordallianceorg Achalasia Support Groups httpachalasiausSupport_Groupshtml Acid Maltase Deficiency Association httpwwwamda-pompeorg Acoustic Neuroma Association httpanausaorg Addisonrsquos Disease Self Help Group UK httpwwwaddisonsorguk Adinoid Cystic Carcinoma Organization International httpwwwaccoiorg Adinoid Cystic Carcinoma Research Foundation httpwwwaccrforg Advocacy for Neuroacanthocytosis Patients httpwwwnaadvocacyorg AIS-DSD Support Group USA (Disorders of Sex Development) httpwwwaisdsdorg Ais (Androgen Insensitivity Syndrome) Support Group httpwwwaissgorg (UK based) AKU (Alkaptonuria) Society httpwwwalkaptonuriainfo Alagille Syndrome Alliance httpwwwalagilleorg ALS Association (Amyotrophic Lateral Sclerosis) httpwwwalsaorg Alopecia Support Group (ASG) httpwwwalopeciasupportorg Alpha-1 Association (Alpha-1 Antitrypsin Deficiency) httpwwwalpha1org Alpha-1 Canada httpwwwalpha1canadaca Alpha-1 Foundation httpwwwalpha-1foundationorg Alport Syndrome Foundation httpwwwalportsyndromeorg Alstrom Syndrome International httpwwwalstromorg Alternating Hemiplegia of Childhood Foundation httpahckidsorg Alveolar Capillary Dysplasia Association httpwwwacd-associationcom ALS Association (Greater New York Chapter) httpwwwals-nyorg Alzheimers Association httpwwwalzorg Alzheimers Foundation of America httpwwwalzfndorg Alzheimerrsquos Association NYC Chapter (Binswanger Disease) httpwwwalznycorgrelateddisordersbinswangerasp AMEND-Association for Multiple Endocrine Neoplasia Disorders httpwwwamendorguk American Association for Klinefelter Syndrome Information and Support httpwwwaaksisorg American Association for Pediatric Ophthalmology and Strabismus httpwwwaaposorg American Association of Kidney Patients httpwwwaakporgoutreachList American Association of the Deaf-Blind (Usher Syndrome) httpwwwaadborgresourcesdb_organizationstexashtml American Association on Intellectual and Developmental Disabilities httpwwwaamrorg American Autoimmune Related Diseases Association Inc httpwwwaardaorg American Behcets Disease Association httpwwwbehcetsorg American Brain Tumor Association httpwwwabtaorg American Cancer Society httpwwwcancerorg American Childhood Cancer Organization httpwwwaccaorg American Diabetes Association httpwwwdiabetesorg American Epilepsy Society httpwwwaesnetorg American Hair Loss Association httpwwwamericanhairlossorg American Health Assistance Foundation httpwwwahaforg American Hearing Research Foundation httpwwwamerican-hearingorg American Heart Association httpwwwheartorg

American Hemochromatosis Society Inc httpwwwamericanhsorg American Institute for Cancer Research httpwwwaicrorg American Kidney Fund Inc httpwwwkidneyfindorg American Lung Association httpwwwlungorg American Lung Association (Primary Ciliary Dyskinesia Kartagenerrsquos Syndrome) httpwwwlungorglung-diseaseprimary-ciliary-dyskinesia American Macular Degeneration Foundation httpwwwmacularorg American Parkinson Disease Association httpwwwapdaparkinsonorg American Partnership for Eosinophilic Disorders httpwwwapfedorg American Porphyria Foundation httpwwwporphyriafoundationcom American Pregnancy Association httpwwwamericanpregnancyorg American Self Help Group Clearinghouse httpwwwselfhelpgroupsorg American Sickle Cell Anemia Association httpwwwascaaorg American Skin Association Inc httpwwwamericanskinorg American Stroke Association (Congenital Heart Defects) httpwwwstrokeassociationorg American Syringomyelia and Chiari Alliance Project httpwwwasaporg American Thoracic Society httppatientsthoracicorgparpio-listphp American Thyroid Association httpwwwthyroidorg American TOS (Thoracic Outlet Syndrome) Association httpwwwatosaorg American Urological Association Foundation httpwwwurologyhealthorg American Uveitis Society httpwwwuveitissocietyorg American Vitiligo Research Foundation httpwwwavrforg AmeriFace (craniofacial defects anomalies) httpwwwamerifaceorg Amputee Coalition httpwwwamputee-coalitionorg Amputee Coalition of America httpwwwmendinglimbsorg Amyloidosis Australia (Also serves NZ) httpwwwamyloidosiscomau Amyloidosis Foundation httpwwwamyloidosisorg Amyloidosis Support Groups Inc httpwwwamyloidosissupportcom Amyotrophic Lateral Sclerosis Association httpwwwalsaorg Amyotrophic Lateral Sclerosis Society of Canada httpwwwalsca Androgen Insensitivity Syndrome Support Group httpwwwaissgorg Anemia Institute for Research and Education httpoptimizinghealthorgabout_airephp Angelman Syndrome Foundation httpwwwangelmanorg Aphasia Hope Foundation httpwwwaphasiahopeorg Angioma Alliance httpwwwangiomaorg Aniridia Foundation International httpwwwaniridianet APS (Antiphospholipid Antibody Syndrome) httpwwwapsfaorg AOSupport (Adams Oliver Syndrome) httpwwwaosupportorg APBD (Adult Polyglucosan Body Disease Research Foundation) httpwwwapbdrforg Aplastic Anemia and MDS International Foundation httpwwwaamdsorg APS Foundation of America Inc httpwwwapsfaorg ARC (People with Intellectual and Developmental Disabilities) httpwwwthearcorg Arachnoid Cyst Awareness Organization httparachnoidcyst1com Arachnoid Cyst Support Group NZ httpwwwarachnoidcystorgnz Arachnoiditis Sufferers Action and Monitoring Society (ACAMS) httpwwweverybodyconz ARPKDCHF Alliance (Autosomal Recessive Polycystic Kidney DiseaseCongenital Hepatic Fibrosis) httpwwwarpkdchforg Arthritis Foundation httpwwwarthritisorg

(The)Arthrogryposis Group (UK) httpwwwtagonlineorguk Arthrogryposis Multiplex Congenita Inc httpwwwamcsupportorg Arthrogryposis Multiplex Congenita Support httphealthgroupsyahoocomgroupArthrogryposisSupport Associacion Sindrome de Tourette del Peru httpwwwtouretteperucom Association for the Bladder Exstrophy Community httpwwwbladderexstrophycom Association for Frontotemporal (Lobar) Degeneration (Dementia) httpwwwtheaftdorg Association for Glycogen Storage Disease httpwwwagsdusorg Association for Glycogen Storage Disease UK httpwwwagsdorguk Association of Genetic Support of Autralasia Inc httpwwwagsa-geneticsupportorgau A-T (Ataxia-Telangiectasia) Childrenrsquos Project httpwwwatcporg httpwwwataxiaorg Ataxia UK httpwwwataxiaorguk Atypical Hemolytic Uremic Syndrome Support Group httpwwwrareconnectorgencommunityatypical-hemolytic-uremic-syn httpwwwmdjunctioncomhemolytic-uremic-syndrome Australasian Genetic Alliance httpwwwaustralasiangeneticallianceorgau (The)Australian Arthrogryposis Group (TAAG) Inc httpwwwtaagorgau Australian Leukodystrophy Support Group httpaldsorgaun=3 AVM Survivorsrsquo Network (arteriovenous malformations) httpwwwavmsurvivorsorg Babyrsquos First Test (Non-Ketotic Hyperglycemia) httpwwwbabysfirsttestorg Bannyan-Ruvalcaba-Riley Syndrome (Information) httpwwwuihealthcareorg2columnaspxid=22904 Bardet-Biedl Syndrome Patient Support httpwwwmdjunctioncombardet-biedl-syndrome Barth Syndrome Foundation httpwwwbarthsyndromeorgenglishviewaspx=1 Batten Disease Support and Research Association httpwwwbdsraorg (US and Canada with chapters in NZ Australia South Africa South America and Spain) BCCNS Life Support Network (Basal Cell Carcinoma Nevus Syndrome) httpwwwbccnsorg Beckwith-Wiedemann Childrens Foundation httpwwwbeckwith-wiedemannsyndromeorg Behcets Organisation Worldwide httpwwwbehcetsukorguk Belgian Association for Metabolic Diseases httpwwwboksbesiteindexphp (For English see NORD) Bellrsquos Palsy Network httpwwwbellspalsynet (Information source) Benrsquos Friends (Builds Communities for People with Rare Diseases) httpwwwbensfriendsorg Benign Essential Blepharospasm Research Foundation httpwwwblepharospasmorg Benign Paroxysmal Positional Vertigo Support httpwwwexperienceprojectcomgroupsHave-Benign-Paroxysmal-Positional-Vertigo89483 Benign Essential Blepharospasm Canadian Research Foundation httpwwwblepharospasmca Beyond Batten Disease Foundation httpwwwbeyondbattenorg Biotinidase Deficiency Family Support Group httpbiotinidasedeficiency20mcom Birt-Hogg-Dube Syndrome httpwwwcancernetpatientCancer+TypesBirt-Hogg-Dube+Syndromeskid= Birth Defects Research for Children Inc httpwwwbirthdefectsorg Blepharophimosis Ptosis Epicanthus Inversus Family Network httpwwwbpesorguk Bloomrsquos Syndrome Foundation (Congenital Telangiectatic Erythema) httpwwwbloomssyndromeorg Brachial Plexus Palsy Foundation httpwwwbrachialplexuspalsyfoundationorg Brain Foundation httpwwwbrain-foundationorg (Also Sweden Canada Singapore Australia)

Brain Tumor Foundation for Children Inc httpwwwbraintumorkidsorg Breast Cancer Network of Strength httpwwwy-meorg (Some information on male and childhood ) Breath of Hope Inc (Congenital Diaphragmatic Hernia awareness) httpbreathofhopeinccom Breathtakers (UK) httpwwwbreathtakersorguk BVVL International (Brown-Vialetto-Van Laere Syndrome) httpwwwbvvlinternationalorg CADASIL -Together We Have Hope (Cerebral Autosomal Dominant Arteriopathy with Subcortical Infarcts and Leukoencephalopathy) httpcadasilfoundationorg CampS Patient Education Foundation (Chiari and Syringomalia) httpwwwgivebackorg Canadian Amyloidosis Support Network (CASN) httpthecasnorg Canadian Angelman Syndrome Society httpwwwangelmancanadaorg Canadian Association for Williams Syndrome httpwwwcaws-canorg Canadian Diabetes Association httpwwwdiabetesca Canadian Directory of Genetic Support Groups httpwwwlhsconcaPatients_Families_VisitorsGenetic_Support_Directory Canadian Hemophilia Society httpwwwhemophiliaca Canadian Immunodeficiencies Patient Organization (CIPO) httpwwwcipoca Canadian Marfan Association httpwwwmarfanca Canadian Organization for Rare Disorders (CORD) httpwwwraredisordersca Canadian Pulmonary Fibrosis Foundation httpwwwcanadianpulmonaryfibrosisca Canadian Society for Mucopolysaccharide and Related Disorders httpwwwmpssocietyca Cardio-Facio-Cutaneous International httpwwwcfcsyndromeorg Canavan Foundation httpwwwcanavanfoundationorg Canavan Research Foundation httpwwwcanavanorg Cancer Care httpwwwcancercareorg Cancer Coalition of America httpwwwcancercoalitioncom Cancer Support Community (Search Childhood Colorectalhellip) httpwwwcancersupportcommunityorg Cancer Hope Network httpwwwcancerhopenetworkorg Cardiac Arrhythmias Research and Education Foundation Inc httpwwwlongqtorg Cardiomyopathy Association Australia httpwwwcmaaorgau Cares Foundation (Congenital Adrenal Hyperplasia) httpwwwcaresfoundationorg (The)Caregiver Calling (Parkinsonrsquos Orthostatic Hypotension) httpthecaregivercallingcomtagpatient-advocacy Caring for the Caregiver httpcaringforthecaregiverorg Caring for Carcinoid Foundation httpwwwcaringforcarcinoidorg Centers for Vulvovaginal Disorders httpwwwcvvdorg CdLS Foundation (Cornelia de Lange Syndrome Foundation Inc) httpwwwcdlsusaorg CdLS World (International Federation of CdLS Support Organizations) httpwwwcdlsworldorg (The)CDG Family Network (Congenital Disorders of Glycosylation) httpwwwcdgscom Cerebral Palsy International Research Foundation httpwwwcpirforg Cerebral Palsy Network (Megalocephney) httpthecpnetworkorgmegalencephalyhtml CFC International (Cardio-Facio-Cutaneous Syndrome) httpwwwcfcsyndromeorg (The)Chagas Disease Foundation httpwwwchagasfoundorg Charcot-Marie-Tooth Association httpwwwcmtausaorg Charcot-Marie-Tooth Association of Australia httpwwwcmtorgau Charcot-Marie-Tooth Disease UK httpwwwcmtorguk CHARGE Syndrome Foundation httpwwwchargesyndromeorg CHASER (Congenital Heart Abnormalities) Support Education and Resources httpwwwcsunedu~hcmth011chaserchaser-newshtml

CHECKORPHAN (Rare Orphan and Neglected Diseases) httpwwwcheckorphanorg Chelsearsquos Hope Lafora Children Research Fund httpswwwchelseashopeorg Chiairi amp Syringomyelia Foundation httpwwwcsfinfoorg Children Living with Inherited Metabolic Diseases (CLIMB) httpwwwCLIMBorguk Childrens Brain Tumor Foundation httpwwwcbtforg Childrens Brittle Bone Foundation httpwwwcbbforg Childrenrsquos Cancer amp Blood Foundation httpwwwchildrenscbforg Childrens Cardiomyopathy Foundation httpwwwchildrenscardiomyopathyorg Childrens Craniofacial Association httpwwwccakidscom Childrens Fund for Glycogen Storage Disease Research Inc httpwwwcuregsdorg Childrens Gaucher Research Fund httpwwwchildrensgaucherorg Childrens Glaucoma Foundation httpwwwchildrensglaucomafoundationorg Childrenrsquos Liver Association Support Services (CLASS) httpwwwclasskidsorg Childrens Liver Disease Foundation httpwwwchildliverdiseaseorg Childrenrsquos Neuroblastoma Cancer Foundation httpwwwcncfhopeorg Childrenrsquos PKU Network httpwwwpkunetworkorg Childrenrsquos Rare Disease Network httpwwwcrdnetworkorgfooterdiseasescphp Childrenrsquos Tumor Foundation httpwwwctforg Chordoma Foundation httpwwwchordomafoundationorg Choroideremia Research Foundation Canada Inc httpwwwchoroideremiaca Christopher and Dana Reeve Foundation httpwwwchristopherreeveorg Chromosome 18 Registry and Research Society httpwwwchromosome18org (worldwide) Chromosome 22 Support httpwwwc22corg Chromosome Disorders Outreach Inc httpwwwrarechromoorghtmlhomeasp Chronic Granulomatous Disease Association Inc httpwwwcgdassociationorg Chronic Granulomatous Disorder Research Trust (CGD) httpwwwmobilityemboorg Chronic Granulomatous Disorder Society httpwwwcgdsocietyorg Cicatricial Alopecia Research Foundation httpwwwcarfintlorg CIDPUSA Foundation (Chronic Inflammatory Demyelinating Polyneuropathy) httpwwwcidpusaorg Churg Strauss Syndrome Association httpwwwcssassociationorg Cleft Palate Foundation (Operation Smile) httpsecureoperationsmileorg Cleveland Clinic (Patient Support Groups) httpmyclevelandclinicorgpatients-visitorssupport-therapysupport-groupsaspx CLIMB UK (Metabolic Diseases) httpwwwclimborguk (US Canada Australia NZ) Clot Connect httpdotconnectorg CMTC-OVM Cutis Marmorata Telangiectatica Congenita (Netherlands) httpwwwcmtcnlindexphplang=nl CMT United Kingdom (Charcot-Marie Tooth Disease) httpwwwcmtorguk Coalition for Pulmonary Fibrosis httpwwwcoalitionforpforg Coalition for Usher Syndrome httpwwwusher-syndromeorg Coats Disease Information for Parents httpwwwcoatsdiseaseorgindexhtml Coccygodynia (Experience Project) httpwwwexperienceprojectcom Coffin-Lowry Syndrome Foundation httpclsfinfo Coffin-Siris Syndrome Support Groups httpwwwaskcomCoffin+Support Collaborative Group of Americas Inherited (Colon Cancer Challenge Foundation) httpwwwcgaicccom Colon Cancer Alliance httpwwwccallianceorg

Congenital Adrenal Hyperplasia Education and Support Network httpwwwcongenitaladrenalhyperplasiaorg (See US Australia UK) Congenital Adrenal Hyperplasia Research Education and Support Foundation httpwwwcaresfoundationorg Congenital Adrenal Hyperplasia Support Group of NZ or CAHNZ Trust httpwwwcahorgnz Congenital Central Hypoventilation Syndrome Family Support Network httpwwwcchsnetworkorg Congenital Heart Information Network (CHIN) httptchinorg Congenital Hyperinsulinism International httpwwwcongenitalhiorg Congenital Sucrase-Isomaltase Deficiency Parent Support Group httpwwwcsidinfocom Conquer Chiari httpwwwconquerchiariorgindexhtml Contact a Family httpwwwcafamilyorguk Cooleys Anemia Foundation (Thalassemia) httpwwwthalassemiaorg (The)Corneal Dystrophy Foundation httpwwwcornealdystrophyfoundationorghtmlcd_definedhtml CORE Center for Organ Recovery and Education httpwwwcoreorg Corneal Research Foundation of America httpwwwcorneaorg Corneal Dystrophy Foundation httpwwwcornealdystrophyfoundationorg Cornelia de Lange Syndrome Foundation Inc httpwwwcdlsusaorg Costello Syndrome Family Network-United States httpwwwcostellosyndromeusaorg Creutzfeldt Jacob Disease Foundation httpwwwcjdfoundationorg CurePSP Foundation for Progressive Supranuclear Palsy (PSP)Corticobasal Degeneration (CBD)and Related Brain Diseases httpwwwpsporg Cri du Chat (Cat Cry5P Syndrome) httpwwwfivepminusorg http4p-supportgrouporg Cushings Support and Research Foundation httpwwwcsrfnet Cutaneous Lymphoma Foundation httpwwwclfoundationorg Cutis Laxa Internationale (Available in English French Spanish and German) httpassoorphanetcutislax Cyclic Vomiting Syndrome Association httpwwwcvsaonlineorg (Also Australia and UK) Cystic Fibrosis Foundation httpwwwcfforg Cystic Fibrosis Research Inc (CFRI) httpwwwcfriorghomeshtml Cystinosis Foundation (Beyond Borders) httpwwwcystinosisfoundationorg Cystinosis Research Foundation httpwwwnatalieswishorg Cystinosis Research Network httpwwwcystinosisorg Daily Strength Support Groups httpwwwdailystrengthorgsupport-groups Dancing Eye Syndrome Support Trust (Opsoclonus Myoclonus) httpwwwdancingeyesorguk Dandy-Walker Alliance httpwwwdandy-walkerorg DanonDiseaseorg httpwwwdanondiseaseorg Danon Disease Support Network httpdanon-disease-supportwebscom Dartmouth-Hitchcock Health Information httppatientsdartmouth-hitchcockorghealth_informationhtml DEBRA of America (Dystrophic Epidermolysis Bullosa httpwwwdebraorg DEBRA International httpwwwdebra-internationalorg Dercum Society httpwwwdercumsocietycom Desmoid Tumor Research Foundation httpwwwdtrforg Developmental Delay Resources (DDR) httpwwwdevdelayorg Devicrsquos Syndrome (Neuromyelitis Optica) httpwwwswvmssupportorg (What Is) Devicrsquos Disease UK httpwwwdevicorguk

Diabetes New Zealand httpwwwdiabetesorgnz Diabetes UK httpwwwdiabetesorgukAbout_usContact_us Diamond Blackfan Anemia Foundation Inc httpwwwdbafoundationorg Diamond Blackfan Anemia and You httpwwwdiamondblackfananemiacom Directory of Health Organizations Online (DIRLINE) httpdirlinenlmnihgov Disease InfoSearch httpwwwdiseaseinfosearchorgsiteindex Disorders of Chromosome 16 Foundation httpwwwtrisomy16org Divry-Van Bogaert Syndrome httpwwwrightdiagnosiscommedicaldivry_van_bogaert_syndromehtm DNAandU httpwwwdnaanduorg Dravetorg httpsdravetorg Dravet Syndrome Foundation httpwwwdravetfoundationorg Dubowitz Syndrome Family Support Network httpwwwricedusherlockcenterdsyndromehomehtml Duchenne Connect httpswwwduchenneconnectorg Dysautonomia Foundation Inc httpwwwfamilialdysautonomiaorg Dysautonomia Youth Network of America httpwwwdynaincorg Dystrophic Epidermolysis Bullosa Research Association of America (DEBRA) httpwwwdebraorg EB (Epidermolysis Bullosa) Medical Research Foundation httpwwwebkidsorg ECD Global Alliance (Erdheim-Chester Disease) httpwwwerdheim-chesterorg Ehlers-Danlos National Foundation httpednforg Ehlers Danlos Foundation of New Zealand httpwwwedfnzorgnz Ehlers Danlos Support UK httpwwwehlers-danlosorg Ehlers Danlos Syndrome Support Group httpwwwdailystrengthorgcEhlers-Danlos-Syndromesupport-group ELA-European Leukodystrophy Association httpwwwela-assocom eOrthopod (Blountrsquos Disease) httpwwweorthopodcomcontentblounts-disease-in-children-and-adolescents Encephalitis Ireland httpwwwencephalitisirelandie Encephalitis Society (Based in UK) httpwwwencephalitisinfo Ependy Parents (Ependymoma) httpwwwependyparentsorg EpendyKids httpependykidscom Epilepsy Foundation httpwwwepilepsyfoundationorg (The)Erythromelalgia Association httpwwwerythromelalgiaorg European Alliance of Neuromuscular Disorders Associations httpwwweamdaeu Euro-Ataxia (European Federation of Hereditary Ataxias) httpwwweuro-ataxiaeu European Chromosome 11 Network http11qchromosome11eu European Skeletal Dysplasia Network httpwwwesdnorgeugHome Eurordis Rare Disease Patient Groups in the European Union httpwwweurordisorgwhat-we-do httpwwweurordisorgspecialized-social-services Evans Syndrome Community Network httpevanssyndromeblogspotcom Evans Syndrome Support and Research Group httpwwwevanssyndromeorg Experience Project I Have a Rare Disease (searchable helps create patient sharing) httpwwwexperienceprojectcomgroupsHave-A-Rare-Disease34120 Fabry Support and Information Group httpwwwfabryorg Fat Disorders Research Society Inc httpwwwfatdisordersorg FACES The National Craniofacial Association httpwwwfaces-cranioorg

(The)Facial Paralysis Foundation httpwwwfacialparalysisinstitutecomfoundation Families of SMA (Spinal Muscular Atrophy) httpwwwfsmaorg Families of SMA (Spinal Muscular Atrophy) International httpwwwfsmaorgFSMACommunityChaptersInternationalAffiliates Families of Spinal Muscular Atrophy Canada httpwwwcuresmaca Family Caregiver Alliance httpwwwthefamilycaregiverorg Family Connect (Children with Visual Impairments) httpwwwfamilyconnectorg Family Support Network httpwwwfamilysupportnetworkorg (helps with disabilities) Fanconi Anemia Research Fund Inc httpwwwfanconiorg Fanconi Syndrome httpviwikidocorgindexphpFanconi_syndrome_(patient_information) Fetal Hope Foundation (Amniotic Band Syndrome) httpwwwfetalhopeorg FEVRnet (Familial Exudative Vitreoretinopathy) httpwwwfevrorg Fibrous Dysplasia Foundation httpwwwfibrousdysplasiaorg Fibromuscular Dysplasia Society of America httpwwwfmdsaorg Fibrosing Mediastinitis httpwwwfibrosing-mediastinitiscom Fibrous Dysplasia Online httpwwwdailystrengthorgcFibrous-Dysplasiasupport-group Fight Colorectal Cancer httpwwwfightcolorectalcancerorg Fight SMA (Spinal Muscular Atrophy) httpwwwfightsmaorg Floating Harbor Syndrome Support Group httpwwwfloatingharborsyndromesupportcom FMF Montrealorg (Familial Mediterranean Fever) httpwwwfmfmontrealorg FMF Community Online Support Groups httpwwwinspirecomgroups FOCUS Families (Optic Nerve Hypoplasia) httpwwwfocusfamiliesorg FOCUS ON (Chronic Lymphocytic Leukemia) httpwwwfocusoncllorg FOD Family Support Group (Fatty Oxidation Disorder) httpwwwfodsupportorg FSH Society Inc (Facioscapulohumeral MD) httpwwwfshsocietyorg FSHD Global Research Foundation httpwwwfshdglobalorg Foundation for Fighting Blindness httpwwwblindnessorg Foundation for Angelman Syndrome Therapeutics httpwwwcureangelmanorg Foundation for Angelman Syndrome Therapeutics httpwwwcureangelmanorgau Foundation for Children with Atypical Hemolytic Uremic Syndrome httpwwwatypicalhusningcom Foundation for Ichthyosis and Related Skin Types (FIRST) httpwwwfirstskinfoundationorg Foundation for Prader-Willi Research httpwwwfpwrorg Foundation for Retinal Research (Leberrsquos Congenital Amaurosis) httpwwwtfrrorg Foundation for Sarcoidosis Research httpwwwstopsarcoidosisorg Freeman-Sheldon Research Group Inc (Former F-S Parent Support Group) httpwwwfsrgroupsorg Friedreichrsquos Ataxia Parentsrsquo Group httpwwwfaparentsorg Friedreichrsquos Ataxia Research Alliance (FARA) httpwwwcurefaorg Friends of ET Research (Essential Thrombocythemia) httpwwwguidestarorgorganizations06-1608492friends-essential-thrombocythemiaaspx Friends of FSH Research (Facioscapulohumeral MD) httpwwwfshfriendsorg Friends of Landau-Kleffner Syndrome (FOLKS UK registered also see aussiefolks) httpwwwfriendsoflkscom Frontotemporal Dementia Caregiver Support Center (Pickrsquos Disease) httpwwwftdsupportcom Frontotemporal Dementia Caregiver Support Center (Corticobasal Degeneration) httpftdsupportcomtypeof-cbdhtm Galactosemia Foundation httpgalactosemiaorg Galactosemia Support Group httpwwwdailystrengthorgcGalactosemiasupport-group Gastroparesis and Dysmotilities Association (GPDA) httpwwwdigestivedistresscom

Gastroschisis Exomphalos Extrophies Parents Support (GEEPS) httpwwwgeepscouk Gastroschisis Support Group Australia httpwwwgastroschisismiracleswebscom GBSCIDP Foundation International (Guillain-Barre Syndrome Chronic Inflammatory Demyelinating Polyneuropathy) httpwwwgbs-cidporg GeneticOrg KSampA httpwwwgeneticorg Genetic Alliance httpwwwgeneticallianceorg Genetic Alliance UK httpwwwgeneticallianceorguk Genetic and Rare Diseases Information Center (GARD) httprarediseasesinfonihgovGARD Genetic Home Reference (Larson Syndrome) httpghrnlmnihgovconditionlarsen-syndrome GeneticRare Conditions NationalInternational Groups httpwwwkumcedugecsupportgrouporghtml Neonatal Hemochromotosis A Gestational Alloimmune Liver Disease httpwwwdiseaseinfosearchorgNeonatal+hemochromatosis5131 GIST Cancer Research Fund (Gastrointestinal Stromal Tumor) httpwwwgistinfoorg Glaucoma Association httpwwwglaucomaorg Glaucoma Research Foundation httpwwwglaucomaorg Glaucoma Research Society of Canada httpwwwglaucomaresearchca Global CDH (Congenital Diaphragmatic Hernia) httpglobalcdhorgHomehtml (The)Global Genes Project httpglobalgenesorg Global Foundation for Peroxisomal Disorders httpwwwthegfpdorg Global Organization for Lysosomal Diseases (GOLD) httpwwwgoldinfoorg Goldenhar Syndrome Support Network Society httpwwwgoldenharsyndromeorg Glycosuria (Information) httpwwwwisegeekcomwhat-are-the-symptoms-of-glycosuriahtm Gravesrsquo Disease and Thyroid Foundation httpwwwgdatforg GuideStar httpwwwguidestarorgSearchResultsaspx (Search Patient Support Groups) Guthy-Jackson Charitable Foundation (Neuromyelitis Optica) httpwwwguthyjacksonfoundationorg Gynecomastia httpwwwmdjunctioncomforumsgynecomastia-discussions Haily-Haily Disease Society httpwwwhaileyhaileycom (Site is blocked see Genetic Alliance for access) Haileyrsquos Wish (Alperrsquos Syndrome and Mitochondrial Diseases in Children) httpwwwhaileyswishorg Hajdu-Chaney (HCS) Support Group httpwwwhajdu-cheneycom HealthfinderGov httpwwwhealthfindergov Health Information Resource Database (National Health Information Center) httphealthgovnhicNHICScriptsHitlistcfmKeyword=patient advocacy Health Link British Columbia httpwwwhealthlinkbcca Health Support GroupsConditions and DiseasesGenetic Disorders httpwwwdmozorgHealthSupport_GroupsConditions_and_DiseasesGenetic_Disorders Healthy Smiles Healthy Children Foundation httpwwwaapdorgfoundation Heart and Hands Loin Pain Hematuria Syndrome (Google for Various Associated Sites) HelpMeSee (Blind Children and Adults) httpwwwHelpMeSeeorg Helping Hands Foundation Inc httpwwwhelpinghandsgrouporg Hemimegalencephaly Family Support Network httpwwwhemimegalencephalycom Hemophilia Federation of America httphemophiliafedorg Hereditary Disease Foundation httpwwwhdfoundationorg Hereditary Hemorrhagic Telangiectasia-Osler-Weber-Rendu Foundation International httphhtorg Hereditary Leiomyomatosis and Renal Cell Cancer Family Alliance httpwwwhlrccinfoorg Hereditary Neuropathy Foundation httpwwwhnf-cureorg Hereditary Spherocytosis Support Group (Via Genetic Alliance also see Patientcouk)

httpwwwgeneticallianceorgorganizationhereditary-spherocytosis-hs-support-group Hermansky-Pudlak Syndrome Network Inc httpwwwhpsnetworkorg Heterotaxy Foundation httpwwwheterotaxyorg Hide amp Seek Foundation for Lysosomal Storage Disease Research httpwwwhideandseekorgDiseaseshtml Histiocytosis Association Inc (of America) httpswwwhistioorg Histiocytosis Association (Rosai Dorfman Disease) httpwwwhistioorgpageaspxpid=595 Histiocytosis Association of Canada httpwwwhistiocytosisca HITS (UK) Family Support Network (Incontinentia Pigmenti Achromians Itorsquos Syndrome Pigmentary Mosaicism) httpwwwpatientcouksearchaspsearchterm=HITS+syndromeampsearchcoll=Allampx=10ampy=13 Homocystinuria Support httpwwwhcusupportcom Hope for Hypothalamic Harmartomas httphopeforhhorg HS-USA (Hidradenitis Suppurativa) httphs-usawebscom Hughes Syndrome Foundation httpwwwhughes-syndromeorgsupporthtm Hunter Patients (Hunter Syndrome mucopolysaccharidosis) httpwwwhunterpatientscom Hunters Hope Foundation (Krabbe-Leukodystrophies) httpwwwhuntershopeorg Huntington Society of Canada httpwwwhuntingtonsocietyca Huntingtons Disease Society of America httpwwwhdsaorg Hydrocephalus Association httpwwwhydroassocorg Hydrocephalus Research Foundation httpwwwghrforgorg Hypomelanosis of Ito httpotconnectionsaotaorgblogshypomelanosis_of_itoarchive20111206hypomelanosis-of-itoaspx Hypoparathyroidism Association Inc httpswwwhypoparaorg IAAI Foundation (Childhood Cancer) httpwwwalexslemonadeorg I-CAN (AIDS Support) httpwwwicanswflorg Ichthyosis Support Group httpwwwichthyosisorguk IgA Nephropathy Support Network httpwwwigansupportorg Immune Deficiency Foundation httpprimaryimmuneorg In Need of Diagnosis Inc httpwwwinodorghome0aspx Incontinentia Pigmenti International Foundation httpwwwipiforg Inflammatory Breast Cancer Foundation httpwwweraseibccom International Aicardi-Goutieres Syndrome Association httpwwwaicardi-goutieresorgindexjsplingua=ENG International Alliance of Patientsrsquo Organizations (IAPO) httpwwwpatientsorganizationsorg International Birth Defects Information Systems httpwwwibis-birthdefectsorgstartfoundhtm International Brain Tumour Alliance httpwwwtheibtaorg International Castlemanrsquos Disease Organization httpwwwcastlemansorg International Childrenrsquos Anophthalmia and Micropthalmia Network httpwwwanophthalmiaorg International Costello Syndrome Support Group httpcostellokidscom International DM2 SupportAdvocacy Group (Myotonic Dystrophy 2) httphealthgroupsyahoocomgroupMyotonicDystrophy2 International Diabetes Federation httpwwwidforg International Eosinophil Society httpwwweosinophil-societyorg International Essential Tremor Foundation httpwwwessentialtremororg International Federation of Anti-Leprosy Associations International Fibrodysplasia Ossificans Progressiva Association httpwwwifopaorg

International Foundation for CDKL5 ( (Cyclin-Dependent Kinase-Like 5) Research httpwwwcdkl5com International Foundation for Functional Gastrointestinal Disorders httpwwwiffgdorg International Foundation for Marfan Syndrome Organizations httpwwwmarfanworldorg International Foundation for Optic Nerve Disease (Leber Hereditary Optic Nerve) httpwwwifondorglhonphp3 International Glaucoma Association httpwwwglaucoma-associationcom International Huntington Association httpwwwhuntington-assoccom International Hyperhidrosis Society httpwwwsweathelporg International Myeloma Foundation httpwwwmyelomaorg International Myotonic Dystrophy Family Foundation httpwwwmyotonicorg International Network of Ataxia Friends httpwwwinternaforg International Prader-Willi Syndrome Organisation httpwwwipwsoorg International Patient Organization for Patients with Primary Immunodeficiencies httpwwwipopiorg International Premature Ovarian Failure Association httpwwwipofaorg International Pemphigus and Pemphigoid Foundation httpwwwpemphigusorg International Rett Syndrome Foundation httpwwwrettsyndromeorg International Scleroderma Network httpwwwscleroorg International Society for Infectious Diseases httpwwwisidorg International Society for Pediatric and Adolescent Diabetes httpwwwispadorg International Stillrsquos Disease Foundation httpwwwstillsdiseaseorg International Susacrsquos Syndrome Foundation httpwwwucalgarycasusacfoundall International WAGR Syndrome Association httpwwwwagrorg Intersex Society of North America (Swyer Syndrome) httpwwwisnaorgfaqconditionsswyer Interstitial Cystitis Association httpwwwichelporg Interstitial Cystitis Network (World Center) httpwwwic-networkcomworld Intracranial Hypertension Research Foundation httpwwwihrfoundationorg Intractable Childhood Epilepsy (ICE) Alliance httpwwwice-epilepsyorgabouthtm Intrahepatic Cholestasis of Pregnancy httpwwwicpcareorg Iron Disorder Institute httpwwwirondisordersorg Italian Registry of MYH9-Related Disease httpwwwregistromyh9orgEnglish_version ITP Foundation (Immune Thrombocytopenic Purpura) httpwwwitpfoundationorg Jain Foundation Inc (Dysferlinopathy Miyoshi Myopathy) httpwwwjain-foundationorg Jeanettersquos APECED (Autoimmune Polyendocrine Syndrome) (NZ) Jeffrey Modell FoundationNational Primary Immunodeficiency Resource Center httpwwwinfo4piorgjmf Jeune Syndrome Information and Support Network httpwwwgeneticallianceorgorganizationjeune-syndrome-information-and-support-network Jewish Genetic Disease Consortium httpwwwjewishgeneticdiseasesorg Johns Hopkins University School of Medicine httpwwwhopkinsmedicineorgsom (Search Patient Support Groups) Joshua Frase Foundation (Myotubular Myopathy) httpwwwjoshuafraseorg Joubert Syndrome Foundation amp Related Disorders httpwwwjsrdforg Justin E Rodgers Foundation for Lemierrersquos Awareness Inc httpwwwlemierresyndromecom Juvenile Diabetes Research Foundation International httpwwwjdrforgfilesGeneral_FilesLife_with_DiabeteslifenewsletterLWD_Nov08pdf Juvenile Scleroderma Network httpwwwjsdnorg Kabuki Syndrome Network httpkabukisyndromecom

Kartagenerrsquos Syndrome httpwwwpatientcoukdoctorKartageners-Syndromehtm Kartagenerrsquos Syndrome and Primary Ciliary Dyskinesia Kawasaki Disease Foundation httpwwwkdfoundationorg Kawasaki Support Group UK httpwwwkssgorguk Kearnes-Sayre Syndrome httpwwwpatientcoukselfhelpasp Kennedyrsquos Disease Association httpwwwkennedyrsquosdiseaseorg KickASorg (Ankylosing Spondylitis Support) httpwwwkickasorg Kidney Cancer Association httpwwwkidneycancerorg KidsHealth (Ectopic Pregnancy) httpkidshealthorgparentpregnancy_centeryour_pregnancyectopichtml Kids v Cancer (Metastatic Medulloblastoma) httpwwwkidsvcancerorg Klebsiella Pneumoniae httpklebsiella-pneumoniaeorg Kleine-Levin Syndrome Foundation Inc httpklsfoundationorg Klinefelter Syndrome Support Group httpklinefeltersyndromeorg Klippel-Feil Syndrome Can Anyone Help httpwwwmedhelporgpostsNeurologyKlippel-Feil-Syndrome---Can-anyone-help-meshow1159258 (The)Klippel-Trenaunay Syndrome Support Group httpk-torg Kure It httpwwwkureitorg (Rare and common cancers) La Leche League International LAM Action httplamactionorg (UK group) (The)Lam Foundation httpwwwthelamfoundationorg Laryngeal Cleft Kids httplaryngealcleftkidsningcom Laryngeal Cleft European Support Group httplaryngeal-cleft-support-groupningcom Laurence-Moon Bardet-Biedl Society UK (LMBB Syndrome) httpwwwlmbbsorguk LDNZ (Lysosomal Diseases New Zealand httpwwwldnzorgnz Les Turner ALS Foundation Ltd httpwwwlesturneralsorg Lesch Nyhanorg and Lesch Nyhan International Study Group httpwwwlesch-nyhanorgenresearch Letrsquos Face It University of MichiganCraniofacial Conditions httpdesicadentumichedufaceit Leukemia and Lymphoma Society httpwwwleukemiaorg Lewy Body Dementia Association httpwwwlbdaorg Lewy Body Dementia Toronto Dementia Network httpwwwdementiatorontoorgdementiasLewyBodyhtm LGS (Lennox-Gastaut Syndrome) Foundation httpwwwlgsfoundationorg Liamrsquos Land Organization Inc httpwwwliamslandorgspecial-donors Life Raft Group (Gastrointestinal Stromal Tumor) httpwwwliferaftgrouporg Lighthouse International httpwwwlighthouseorg (Search Rare Conditions) Limb Differences (International) httplimbdifferencesorg Lissencephaly Contact Group httpwwwlissencephalyorguk Lipid Storage Disorders Patient Support Groups httpwwwmdjunctioncomlipid-storage-disorders Lipoma Support Group httpwwwmdjunctioncomlipoma Little People of America Inc (Short Stature) httpwwwlpaonlineorg Living with CIDP (Chronic Inflammatory Demyelinating Polyneuropathy) httpwwwlivingwithcidporg Living with Eagle Syndrome httpwwwlivingwitheagleorg Living with Thrombophilia (Factor V Leiden FVL) httpwwwfvleidenorg Living with Trisomy 13 httpwwwlivingwithtri13org LMSarcoma Direct Research Foundation (Leiomyosarcoma) httpwwwlmsdrorg Locks of Love httpwwwlocksofloveorg

Loeys-Dietz Syndrome Foundation httpwwwloeysdietzorg Loeys-Dietz Syndrome Foundation-Canada httpwwwloeysdietzorgcanadaphp Lowe Syndrome Association httpwwwlowesyndromeorg Lupus Foundation of America httpwwwlupusorg Lymphangiomatosis ampGorhamrsquos Disease httpwwwlgdallianceorg Lymphatic Research Foundation httpwwwlymphaticresearchorgmainphpcontent=home Lymphoedema Support Network (LSN) httpwwwlymphoedemaorg Lymphoma Research Foundation httpwwwlymphomaorg Lynch Syndrome International httpwwwlynchcancerscom Lysosomal Disease Network (Lysosomal Storage Disease httpwwwlysosomaldiseasenetworkorg MaculaORG (Association for Macular Diseases) httpwwwmaculaorg Macular Degeneration Foundation httpwwweyesightorg Macular Disease Society httpwwwmaculardiseaseorg Madisonrsquos Foundation httpwwwmadisonsfoundationorg MAGNUM (The National Migraine Association) httpwwwmigrainesorg MACS-The Micro and Anophthalmic Childrenrsquos Society httpwwwmacsorguk Maliarsquos Cord Foundation httpwwwcordfoundationorg Malignant Hyperthermia Association of the United States (MHAUS) httppatientsmhausorg Maple Syrup Urine Disease Family Support Group (MSUD) httpwwwmsud-supportorg March of Dimes Birth Defects Foundation httpwwwmarchofdimescom Marfan Association UK httpwwwmarfan-associationorguk Marigold Foundation httpmarigoldfoundationorg (Myotonic Muscular Dystrophy-Canadian) Marshall-Smith Syndrome (MSS) Research Foundation httpwwwmarshallsmithorg Mastocytosis Society Inc httpwwwtmsforacureorg M-CM Network (Macrocephaly-Capillary Malformation) httpwwwm-cmnet MEBO Research httpwwwmeboresearchorgaboutmebohtml (The) Megan Foundation for Usher Syndrome httpwwwmeganfoundationorgusher-syndrome Melorheostosis Association httpwwwmelorheostosisassociationorg (NIH need to allow this URL) Menetrierrsquos Disease (Giant Hypertrophic Gastritis) httpwwwpatientcoukdoctorMenetriers-Diseasehtm Mesothelioma Help Now httpwwwmesotheliomahelpnowcommesothelioma-support MdDS Balance Disorder Foundation (Mal de Debarquement Syndrome) httpwwwmddsfoundationorg MD Junction Support Groups httpwwwmdjunctioncomsupport-groups MedicAlert Foundation httpwwwmedicalertorg Melnick-Needles Syndrome Support Group httpwwwmelnickneedlesyndromecom MELAS Experience Project httpwwwexperienceprojectcomgroupsHave-Melas-Syndrome98678 Meningitis Foundation of America httpwwwmeningitis httpwwwmeningitisfoundationofamericaorg Mental Health America httpwwwmentalhealthamericanet Metabolic Disorders Support Group Inspire httpwwwinspirecomgroupsmetabolic-disorders MHE Research Foundation (Multiple Hereditary Exostoses and Osteochondroma Syndrome) httpwwwmheresearchfoundationorg Michael J Fox Foundation (Parkinsonrsquos Disease) httpwwwmichaeljfoxorg MitoAction (Mitochondrial Disease) httpwwwmitoactionorg Moebus Syndrome Foundation (STARS) httpwwwmoebiussyndromecom Moebius Syndrome Support Network httpwwwwincomnetmoebius Mollaretrsquos Meningitis Support Group httpmollaretsmeningitusningcom

Motor Neurone Disease Association httpwwwmndassociationorg Mowat-Wilson Syndrome Support Group httpwwwmowatwilsonsyndromeorguk MPN Education Foundation (Myeloproliferative Neoplasms) httpwwwmpdinfoorg MPN Research Foundation (Myeloproliferative Neoplasms) httpwwwmpnresearchfoundationorg Mucolipidosis Type IV Foundation Inc httpwwwml4org Multiple Hereditary Exostoses (MHE) Patient Support (UK based) httpwwwradixnet~hoguemhehtm Multiple Myeloma Research Foundation httpwwwthemmrforg Multiple Sclerosis Association of America httpwwwmsassociationorg Multiple Sclerosis Society httpwwwnationalmssocietyorgindexaspx Multiple Sclerosis Foundation httpwwwmsfocusorg Muscular Dystrophy Association httpmdaorg Muscular Dystrophy Campaign httpwwwmuscular-dystrophyorg Muscular Dystrophy Family Foundation httpwwwmdfforg Muscular Dystrophy Foundation httpwwwmyotonicorg My Child Without Limits (Developmental Delay etc) httpwwwmychildwithoutlimitsorg Myasthenia Gravis Foundation of America Inc httpwwwmyastheniaorg (The)Myelin Project for Research and Education httpwwwmyelinorg Myelofibrosis Research Foundation httpwwwmpnresearchfoundationorgSupport-Groups Myeloma Canada httpwwwmyelomacanadaca Myeloma UK httpwwwmyelomaorguk (The)Myelin Project httpwwwmyelinorg (The)Myocarditis Foundation httpmyocarditisfoundationorg MyHelathShare Community Center (CheckOrphan) httpmyhealthshareorg Myositis Association httpwwwmyositisorgtemplatepagecfmid=2 Myotonic Dystrophy Foundation httpwwwmyotonicorg Myotonic Dystrophy Support Group httpwwwmyotonicdystrophysupportgrouporg Nail Patella Syndrome Worldwide httpwwwnpsworg Narcolepsy Network Inc httpwwwnarcolepsynetworkorg Nathans Battle Foundation (Late Infantile Batten Disease) httpwwwnathansbattlecom National Adrenal Diseases Foundation httpwwwnadfus National Alliance for Breast Cancer Organizations httpwwwlooktothestarsorg National Alliance for Eye and Vision Research httpwwweyeresearchorg National Alliance on Mental Illness httpwwwnamiorg National Alopecia Areata Foundation httpwwwnaaforg National Ankylosing Spodylitis Society UK httpwwwnasscouk National Aphasia Association httpwwwaphasiaorg National Association for Parents of Children with Visual Impairments httpwwwspedexcomnapvi National Association for Continence httpwwwnafcorg National Association for Pseudoxanthoma Elasticum httpwwwpxenapeorg National Association of the Deaf httpwwwnadorg National Ataxia Foundation httpwwwataxiaorg National Brain Tumor Society httpwwwbraintumororg National Dysautonomia Research Foundation httpwwwndrforg National Dystonia Research Foundation httpwwwndrforg National Eosinophilia-Myalgia Syndrome Network httpwwwnemsnorg National Fabry Disease Foundation httpfabrydiseaseorg National Foundation for Ectodermal Dysplasias httpwwwnfedorg

National Family Caregivers Association httpwwwnfcacaresorg National Federation of the Blind httpwwwnfborg National Foundation for Ectodermal Dysplasias httpwwwnfedorg National Foundation for Infectious Diseases httpwwwnfidorg National Fragile X Foundation httpwwwfragilexorg National Gaucher Foundation httpwwwgaucherdiseaseorg National Gaucher Foundation of Canada httpwwwgauchercanadaca National Headache Foundation httpwwwheadachesorg National Hemophilia Foundation (Includes platelet function defects) httpwwwhemophiliaorg National Hydrocephalus Foundation httpwwwnhfonlineorg National Infertility Association httpwwwresolveorg National Keratoconus Foundation httpwwwnkcforg National Kidney Center httpwwwnationalkidneycenterorg National Kidney Foundation Inc httpwwwkidneyorg National LeioMyosarcoma Foundation httpwwwnlmsforg National Lipedema Association httpwwwlipedemaorg (Site being prepared) Also see httpswwwgivebackorgcause3542National-Lipedema-Association-Incaspx National Lymphedema Network httpwwwlymphnetorg National Marfan Foundation httpwwwmarfanorgmarfan National MPS Society(Mucopolysaccharidoses) httpwwwmpssocietyorg National Multiple Sclerosis Society httpwwwnationalmssocietyorgindexaspx National Neutropenia Network httpwwwneutropenianetorg National Niemann-Pick Disease Foundation Inc httpwwwnnpdforg National Organization for Albinism and Hyperpigmentation httpwwwalbinismorg National Organization for Rare Diseases (NORD) httpwwwrarediseasesorgpatient-orgscurrent National Organization of Disorders of the Corpus Callosum httpwwwnodccorg National Organization of Vascular Anomalies httpwwwnovanewsorg National Osteonecrosis Foundation httpnonforg National Ovarian Cancer Coalition httpwwwovarianorg National Pancreas Foundation httpwwwpancreasfoundationorg National Parkinson Foundation httpwwwparkinsonorg National PKU Alliance httpwwwnpkuaorg National PKU News (Organizations) httpwwwpkunewsorgsupportgroupshtm National Primary Immunodeficiency Resource Center httpwwwinfo4piorg (Common but with rare subsets) National Psoriasis Foundation httpwwwpsoriasisorg National Rehabilitation Information Center httpwwwnariccom National Respite Network and Resource Center httparchrespiteorg National Rosacea Society httpwwwrosaceaorg National Reyersquos Syndrome Foundation httpwwwreyessyndromeorg National Society for Phenylketonuria httpwwwnspkuorg National Spasmodic Dysphonia Association (Laryngeal Dyskinesia) httpwwwdysphoniaorg National Spasmodic Torticollis Association httpwwwtorticollisorg National Spinal Cord Injury Association httpwwwspinalcordorg National Spinal Cord Tumor Association httpwwwspinalcordtumororg National Stroke Association httpwwwstrokeorg (A)National Support Group for Arthrogryposis Multiplex Congenita (AVENUES) httpwwwavenuesforamccom

National Tay-Sachs and Allied Diseases Association httpwwwntsadorg National Tuberous Sclerosis Alliance httpwwwtsallianceorgindexaspx National Urea Cycle Disorders Foundation Httpwwwnucdforg National Vulvodynia Association httpwwwnvaorg NBIA Disorders Association (Neurodegeneration with Brain Iron Accumulation) httpwwwnbiadisordersorg (The)NephCure Foundation (Nephrotic Syndrome) httpwwwnephcureorg (The)Necrotizing Fasciitis Foundation httpwwwnnfforg Nephrogenic Diabetes Insipidus Foundation httpwwwndiforg Neurofibromatosis Inc httpwwwnfnetworkorg Neurofibromitosis Mid-Atlantic httpwwwnfmidatlanticorg Neutropenia Support Association Inc httpwwwneutropeniaca Nevus Outreach Inc httpwwwnevusorg httpwwwpatientcouksearchaspsearchterm=JADASSOHN (Tieche-Jadassohn Nevus) NOMID Alliance (Cryoptrin-Associated Periodic SyndromesInflammatory Diseases) httpwwwnomidallianceorg Nonketotic Hyperglycemia International Family Network Noonan Syndrome Support Group Inc httpwwwnoonansyndromeorg NORD Rare Disease Support Community (Mucha-Habermann Disease) httpwwwinspirecomgroupsrare-diseasediscussionmucha-habermann-disease-1 Norrie Disease Association httpwwwnorriediseaseorg Obstetric Cholestasis Support httpwwwocsupportorgindexhtml Ocular Immunology and Uveitis Foundation Httpwwwuveitisorg Ocular Melanoma Foundation httpwwwocularmelanomaorg (Click on Patients) Ocular Immunology and Uveitis Foundation (Panuveitis) httpwwwuveitisorg Oculo-Dento-Digital Dysplasia Support Group httpwwweverydayhealthcomhealth-centeroculo-dento-digital-dysplasiaaspx Ohdo Syndrome Family Network Office of Rare Diseases ResearchNCATSNIH httpwwwrarediseasesinfonihgov httprarediseasesinfonihgovResourcesPatient_Advocacy_Groupsaspx Olivopontocerebellar Atrophy Hereditary httpwwwataxiaorgpdfSporadicpdf Opsoclonus-Myoclonus Syndrome USA and International httpwwwomsusaorg Organic Acidemia Association Support Community httpwwwinspirecomgroupsorganic-acidemia-association Organization for Autism Research httpwwwresearchautismorg OrphaNet (Search portal for international patient organizations) httpwwworphanetconsorcgi-binSupportGroupphplng=EN Osteogenesis Imperfecta Foundation httpwwwoiforgsitePageServer Oto-PalatelDigital Syndrome Family Research Network httpwwwopdsyndromeorg Ovarian Cancer National Alliance httpwwwovariancancerorg (The)Oxalosisand Hyperoxaluria Foundation httpwwwohforg Pachyonychia Congenita Project httpwwwpachyonychiaorg Paget Foundation httpwwwpagetorg (Paget Disease of Bone and Related Disorders) Pallister-Killian Syndrome httpwwwpkskidsnet PAN Research and Support Network (Polyarteritis Nodosa) httpwwwpansupportnetworkorg Pancreatic Cancer Action Network httpwwwpancanorg Panniculitis Support Group httphealthgroupsyahoocomgrouppanniculitis Panuveitis (Description and Information) httpwwwpanuveitiscom

Parent Project Muscular Dystrophy httpwwwparentprojectmdorg Parent to Parent of New Zealand Inc httpwwwparent2parentorgnz Parents and Researchers Interested in Smith-Magenis Syndrome httpwwwprismsorg Parents of Blind Children httpwwwnfborgparents-and-teachers Parents of Infants and Children with Kernicterus (PICK Online) httpwwwpickonlineorg Parkinsonrsquos Disease Foundation httpwwwpdforgenabout_pdf Parkinsonrsquos Patients Support Groups Inc httpwwwppsgorg (The) Rombergrsquos Connection (Parry Romberg Syndrome httpwwwtherombergsconnectioncom Parry Romberg Syndrome Resource Inc httpwwwprsresourcecom Parsonage Turner Syndrome httpwwwautoimmunitycommunityorg Patientcouk httpwwwpatientcouk (Health Informationsearch rare diseases directory) Patientcouk Support Directory httpwwwpatientcouksupport-directoryasp Patients Connect httppatients-connectcom Pedal with Pete (Cerebral Palsy) httppedal-with-peteorgcerebral-palsy Pediatric Brain Tumor Foundation httpwwwpbtfusorg Pediatric Neurotransmitter Disease Association httpwwwpndassocorg Pelizaeus-Merzbacher Disease Foundation httppmdfoundationorg Pemphigus and Pemphigoid Foundation (International) httpwwwpemphigusorg Periodic Paralysis Association httpwwwperiodicparalysisorgenglishviewaspx=1 Peutz-Jegherrsquos Syndrome httpwwwmdjunctioncomforumspeutz-jeghers-syndrome-discussionsgeneral-support17922-welcome-to-the-peutzjeghers-syndrome-support-group Phelan-McDermid Syndrome Foundation http22q13orgj15 Picardi-lassueur-little Syndrome httpwwwexperienceprojectcomgroupsHave-Picardi-lassueur-little-Syndrome92364 Pickrsquos Disease (Helpguideorg) httpwwwhelpguideorgelderpicks_diseasehtm Pierre Robin Network httpwwwpierrerobinorg Pituitary Network Association httpwwwpituitaryorgintroaspx (Also Canada) Pitt Hopkins Syndrome International Network httpwwwpitthopkinsorg PKD Foundation (Polycystic Kidney Disease) httpwwwpkdcureorg ( See also UK Canada Australia) PKS Kids (Pallister-Killian Syndrome) httpwwwpkskidsnet PKU (Phenylketonuria) and Allied Disorders (Canadian) httpwwwcanpkuorg Platelet Disorder Support Association httpwwwpdsaorg PMP Research Foundation httpwwwpmpcureorg Poland Syndrome Suppport Group httpwwwpssgcharityorg (UK based) Polio Experience Network (Post-Polio Syndrome) International on-line httpwwwpolionetorg Polymyalgia Rheumatica Experience Project (Juvenile) httpwwwdailystrengthorggroupspolymyalgia-rheumaticamembers httpwwwexperienceprojectcomgroupsHave-Polymyalgia-Rheumatica99241 Polymyalgia Rheumatica INSPIRE httpswwwinspirecomconditionspolymyalgia-rheumatica Polymyositis and Dermatomyositis Support Group httpwwwdailystrengthorgcPolymyositis-and-Dermatomyositissupport-group Post-Polio Health International httpwwwpost-polioorg Potter Syndrome Support and Contact Group httpwwwpatientcouksupportPotterrsquos-Syndrome-Support-and-Contact-Grouphtm Prader-Willi Syndrome Association httpwwwpwsausaorg Prevent Blindness America httpwwwpreventblindnessorg Primary Ciliary Dyskinesia (PCD) Foundation httpwwwpcdfoundationorg Progeria Project Foundation httpwwwprogeriaprojectcom

Progeria Research Foundation Inc httpwwwprogeriaresearchorg Progressive Osseous Heteroplasia Association httpwwwpohdiseaseorg Propionic Acidemia Foundation httpwwwpafoundationcom Proteus Syndrome Foundation httpwwwproteus-syndromeorg Proyecto pde un Deseo Mexico httpiappideundeseoorg Prune Belly Syndrome Network (PBSN) httpwwwprunebellyorg PSC Partners Seeking a Cure httpwwwpscpartnersorg Pseudo Xanthoma Elasticum httpwwwpxeorguk Pulmonary Fibrosis Foundation httpwwwlungorg Pulmonary Hypertension Association httpwwwphassociationorg Purine Research Society httpwwwpurineresearchsocietyorg Q Fever httpwwwpatientcoukdoctorQ-Feverresources and httpwwwexperienceprojectcomgroupsHave-Q-Fever92171 Qazi Markouizos Syndrome httpwwwexperienceprojectcomgroupsHave-Qazi-Markouizos-Syndrome92172 Quebec Platelet Disorder (Platelet Disorder Support Association) httpwwwpdsaorg Rabies httpwwwdailystrengthorgcRabiessupport-group httpwwwuptodatecomcontentsrabies-beyond-the-basics httpwwwpatientcoukhealthRabies-immunisationhtm Rabson-Mendenhall Syndrome httpwwwrarediseasesorgrare-disease-informationrare-diseasesbyID1119viewAbstract Rare Cancer Alliance httpwwwrare-cancerorg Rare Cancer AlliancePatientcouk httpwwwpatientcouksupportRare-Cancer-Alliancehtm Rare Cancers Europe httpwwwrarecancerseuropeorg Rare Genetic Skin Disease Center httpwwwgeneskinorgrare-genetic-skin-diseasesaspx Rare Connect A Partnership of Eurordis and NORD httpwwwrareconnectorgen RareShare httprareshareorg RASopathy Network USA httpras-pathway-syndromescomrasopathies-network-usa R-E Childrenrsquos Project (Rasmussen Encephalitis) httpwwwrechildrensorgblog Recombinant Chromosome 8 Syndrome httpwwwexperienceprojectcomgroupsHave-Recombinant-Chromosome-8-Syndrome92005 httpwwwcheckorphanorgdiseaserecombinant-chromosome-8-syndrome Recurrent Respiratory Papillomatosis Foundation httpwwwrrpforg Reedrsquos Syndrome (Check Orphan) httpwwwcheckorphanorgdiseasereeds-syndrome Reflex Sympathetic Dystrophy Syndrome Association of America httpwwwrsdsorgindex2html Relapsing Polychondritis httpwwwpatientcoukdoctorRelapsing-Polychondritishtm httpwwwrelapsingpolychondritisorg Renal Support Network httpwwwrsnhopeorg Renpenning Syndrome (Description and Resources) httppradaisblogspotcom201207genetics-home-reference-renpenninghtml Reflex Sympathetic Dystrophy Syndrome Association of America httpwwwrsdsorgindex2html RESOLVE The National Infertility Association httpwwwresolveorg Retinitis Pigmentosa httpwwwgallowaysorgukeyeinformationeyetab06html Rett Syndrome Foundation International httpwwwrettsyndromeorg Rickets httpwwwhealthlibrarycombook6_chapter74htm Ring Chromosome 22 httpwwwchromodisorderorgCDOGeneralIntroToChromosomesaspx Ringed Hair Dysplasia (Dermatology Interest Group Association) httpwwwderminterestorgphpbb3viewtopicphpf=1ampt=584

Robinow Syndrome Foundation httpwwwrobinoworg Rocky Mountain Spotted Fever httpsmyadvocatehealthcompublichealthresearchcontent_display_fullcfmdoc_id=P02538 httpwwwmdjunctioncomrocky-mountain-spotted-fever (The)Rombergrsquos Connection (Parry Romberg Syndrome) (International) httpwwwtherombergsconnectioncom Rothman-Thomson Syndrome Foundation httprtsplaceorg Rotorrsquos Syndrome httpwwwpatientcouksearchaspsearchterm=ROTOR+SYNDROME Rubella httpwwwmdjunctioncomforumsrubella-discussionsgeneral-support Rubinstein-Taybi Parent Group httpwwwrubinstein-taybiorg Russell-Silver Syndrome Advocate httprssadvocatewordpresscom SADS Foundation (Sudden Arrhythmia Death Syndrome) httpwwwsadsorgStopSADS Saethre-Chotzen Syndrome Patient Support Group httpwwwdailystrengthorgcSaethre-Chotzen-Syndromesupport-group Sandhoff Disease Patient Support Group httpwwwmdjunctioncomsandhoff-disease Schimke Syndrome Patient Support Group Schinzel-Giedion Syndrome Patient Support Group httpwwwschinzel-giedionorg Schizencephaly Patient Support Group httpschizkidzbuddiescom httpwwwpatientcoukleafletsschizencephalyhtm Scleroderma Foundation Inc httpwwwsclerodermaorg Scleroderma Society of Canada httpwwwsclerodermaca Scleroderma Research Foundation httpwwwsrfcureorg Scleromyxedema Patient Support Group httpwwwscleromyxedemanet Scoliosis Research Society httpwwwsrsorg SCOT Deficiency (Succinyl-CoA 3 ketoacid transferase deficiency) httpwwwdiseaseinfosearchorgSCOT+deficiency6468 Also see OrphaNet Share amp Care (Cockaynersquos Syndrome) Network httpwwwcockaynesyndromenetmain Shwachman-Diamond Syndrome Foundation httpwwwshwachman-diamondorg Schwannoma Patient Support Group httpanausaorg (Acoustic Neuroma Association) Sclerosing Mesenteritis Support httphealthgroupsyahoocomgrouppanniculitis httphealthgroupsyahoocomgroupInternationalMesentericPanniculitisSociety Sepiapterin Reductase Deficiency httpwwwpndassocorg (Pediatric Neurotransmitter Disease Association) Septo-Optic Dysplasia patient support (See Focus Families httpwwwfocusfamiliesorg) Serpiginous Choroiditis httpwwwrightdiagnosiscomsserpiginous_choroiditisintrohtm (Right Diagnosis) Severe Combined Immunodeficiencies (SCID) Patient Support httpwwwscidnet Sezary Syndrome httpwwwclfoundationorgsitesdefaultfilescontentFact20Sheet_SSpdf (Cutaneous Lymphoma Foundation) Sheehanrsquos Syndrome (VHL Family Alliance) httpwwwinspirecomgroupsvhl-family-alliancediscussionsheehans-syndrome SHORT Syndrome patient support httwwwlpaorg (Little People of America Inc) Also search wwworphanet for SHORT Syndrome Sialadentis Sialadosis patient support httpwwwpatientcoukleafletssialadenitishtm Sialic Acid Storage Disorders (See metabolic and lysosomal diseases organizations) Siderblastic Anemias httpwwwmedscapecom (Search for specific information) Silicosis patient support httpwwwmedhelporg (Search condition) Also httpcopdsupportgroupscomsgcopdsilicosis

Simpson-Golabi-Behmel Syndrome httpwwwsickkidsca and httpwwworphanet (Search) Singleton Merten Syndrome (Ectodermal Dysplasia) httpswwwcaring4dermatologycomgocommunitytoolsknowledgebase Situs Invertus Patient Support httpwwwrightdiagnosiscomssitus_inversusintrohtm Sjogrenrsquos Syndrome Foundation httpwwwsjogrensorg Sjogrenrsquos World (chat roomsmessage boards) httpwwwsjogrensworldorg Slovakian Patient Alliance for Rare Diseases httpwwwsazchsk (Not Translated) Smith-Lemli-OpitzRSH Foundation httpwwwsmithlemliopitzorg Smith-Magenus Syndrome Patient Support (PRISMS) httpwwwprismsorg Sneddonrsquos Foundation (Sneddonrsquos Syndrome) httpwwwsneddonsyndromeorg Soft Trisomy 18 13 and Related Disorders httpwwwtrisomyorg Sotos Syndrome Support Association httpwwwsotossyndromeorg Sotos Syndrome Support Association of Canada httpwwwsssaccom Spastic Paraplegia Foundation httpwwwsp-foundationorg Spina Bifida Association httpwwwspinabifidaassociationorg Spinal Muscular Atrophy Foundation httpwwwsmafoundationorg (Research and Treatment) Spitz Nevus Patient Support (DermNet NZ) httpwwwdermnetnzorglesionsspitz-naevushtml Spondylitis Association of America httpwwwspondylitisorg STARS- Syncope Trust and Reflex Anoxic Seizures httpwwwstarsorguk Stargardt Syndrome Patient Support (See Lighthouse International and Foundation for Fighting Blindness) Steatocystoma Multiplex support (Steady Health) httpwwwsteadyhealthcomSteatocystoma_Multiplex___Cause__Treatment_and_Diet_for_Prevention_t183885htmlpage=4 httpwwwdermpediaorgdermpedia-textbooksteatocystoma-multiplex Stevens Johnson Syndrome Foundation httpsjsupportorg Stickler Involved People httpwwwsticklersorgsip2 Stiff Person Syndrome httpwwwstiffmanorg httpwwweurordisorgcontentstiff-man-syndrome-still-dancing-inside (International) Stone Circle of Friends (Myotonic Muscular Dystrophy) httpwwwstonecircleoffriendscom Sturge-Weber Foundation httpwwwsturge-weberorg Sturge-Weber Foundation UK httpwwwsturgeweberorguk Sturge-Weber Foundation (Canada) Inc httpwwwsturge-weberca (The)Support Group for DiGeorge and Velo-Cardio-Facial Syndromes httpwwwvcfsconnectorgindexphpoption=com_contentamptask=viewampid=17ampItemid=33 Support Groups for Patients with Rare Cancers httpwwwaskcomwebqsrc=4018ampo=102858ampl=dirampq=Support+Groups+for+Patients+with+Rare+Cancersampoo=0 Support for Disorders of Chromosome 22 (Catrsquos Eye Syndrome) httpwwwc22corgceshtm Support Links for Parents and Patients (Variety of Diagnoses Resource) httpwwwallkidsorgbodycfmid=569 Susacrsquos Syndrome Support Network httpsusacssyndromesupportnetworkwordpresscomforum Syndactyly Patients Support (PatientCoUK) httpwwwpatientcouksearchaspsearchterm=SYNDACTYLY Syringomyelia Patient Support Group httpwwwdailystrengthorgcSyringomyeliasupport-group Systemic Onset Juvenile Idiopathic Arthritis httpwwwuptodatecomcontentssystemic-onset-juvenile-idiopathic-arthritis-treatment Taiwan Foundation for Rare Disorders httpwwwtfrdorgtwenglish Tangier Disease httpwwwmdjunctioncomtangier-disease

TAR Syndrome Support Group httpwwwivhseTAR Tarlov Cyst Association httpwwwtarlovcystnet Tarsal Tunnel Syndrome Support Group httpwwwmdjunctioncomtarsal-tunnel-syndrome Tay-Sachs Disease Support Group httpwwwmdjunctioncomtay-sachs-disease Telfer-Sugar-Jaeger Syndrome httpwwwrightdiagnosiscomttelfer_sugar_jaeger_syndromeintrohtm Testicular Cancer Society httpwwwtesticularcancersocietyorg Theodor Hertz Goodman Syndrome httpwwwrightdiagnosiscommedicaltheodor_hertz_goodman_syndromehtm Tieche-Jadassohn Nevus Patient Support Groups (See Nevus) httpwwwnevusorg Tietze Syndrome Support Group httpwwwmdjunctioncomindexphpoption=com_comsgamptask=guidelinesampsg_id=515ampItemid=427 TNA-The Facial Pain Association httpwwwfpa-supportorg Tollner Horst Manzke Syndrome Patient Support httpwwwrightdiagnosiscomttollner_horst_manzke_syndromeintrohtm Toni-Debre Fanconi Syndrome httpdewikipediaorgwikiDe-Toni-Fanconi-Syndrom (In German request English translation) Tourette Syndrome Association Inc httpwwwtsa-usaorg (I Have)Transient Global Amnesia httpwwwexperienceprojectcomgroupsHave-Transient-Global-Amnesia91337 Transverse Myelitis Association httpmyelitisorg Treacher Collins Family Support Group httpwwwtreachercollinsnet TREAT-NMD(Neuromuscular Network) httpwwwtreat-nmdeu Trisomy 18 Foundation httpwwwtrisomy18org Tuberous Sclerosis Alliance httpwwwtsallianceorg Tucker Syndrome httpwwwrightdiagnosiscomttucker_syndromeintrohtm Turner Syndrome Foundation httpwwwturnersyndromefoundationorg Turner Syndrome Society of the United States httpwwwturnersyndromeorg Tyrosinemia Support Group httpwwwdailystrengthorgcTyrosinemiasupport-group httpswwwcounsylcomdiseasestyrosinemia-type-i Uniparental Disomy httpwwwrightdiagnosiscommedicaluniparental_disomy_of_10htm United Brachial Plexus Network Inc httpwwwubpnorg United Leukodystrophy Foundation httpulforg United Mitochondrial Disease Foundation httpwwwumdforg United Pompe Foundation httpwwwunitedpompecom United Spinal Association httpwwwunitedspinalorg (spinal injuries disabilities and diseases) Unverricht Lundborg Disease httpwwworphanetconsorcgi-binOC_ExpphpLng=ENampExpert=308 Upington Disease httpwwwcheckorphanorgdiseaseupington-disease Upton Young Syndrome httpwwwrightdiagnosiscomuupton_young_syndromeintrohtm US Hereditary Angioedema Association httpwwwhaeaorgabout Van Den Bosch Syndrome httpwwwrightdiagnosiscomvvan_den_bosch_syndromeintrohtm Vascular Birthmarks Foundation httpbirthmarkorg Vascular Web (Mesenteric Ischemia) httpwwwvascularweborgvascularhealthPagesmesenteric-ischemiaaspx Vasculitis Foundation httpwwwvasculitisfoundationorg Vasculitis Foundation (Takayasursquos Arteritis) httpwwwvasculitisfoundationorgeducationformstakayasus-arteritis Vasculitis Foundation Canada httpwwwvasculitisca

Vazquez Hurst Sotos Syndrome httpwwwrightdiagnosiscomvvasquez_hurst_sotos_syndromeintrohtm Velo-Cardio-Facial Education Foundation httpwwwvcfseforg Vestibular Disorders Association httpvestibularorg (see also Australian and Canadian associations) Von Hippel-Lindau (VHL) Syndrome httpwwwvhlorg Wagner Syndrome httpwwwwagnersyndromeeu Waldmann Disease httpwwwrightdiagnosiscomwwaldmann_diseaseintrohtm Walker-Warburg Syndrome httpwwwmazornetcomgeneticswalkerwarburghtm (Jewish Genetic Disease Mazor Guide) Walker Dyson Syndrome httpwwwrightdiagnosiscomwwalker_dyson_syndromeintrohtm Watson Syndrome (Neurofibromitosis Type 1) httpwwwrightdiagnosiscommedicalwatson_syndromehtm We Care MLD (Metachromatic Leukodystrophy) Foundation httpwwwmldfoundationorg WeMove (for movement disorders worldwide) httpwwwwemoveorg Wendt Center for Loss and Healing httpwendtcenterorg Vici Syndrome httpjawikidocorgindexphpVici_syndrome Wide Smiles httpwwwwidesmiles2org Williams Syndrome Association httpwwwwilliams-syndromeorg Wilsonrsquos Disease Association International httpwwwwilsonsdiseaseorg Windows of Hope Project (Pierson Syndrome) httpwwwwohprojectorgDisordersa-zpierson-syndrome-1pierson-syndrome Wisconsin MECFS Association Inc httpwwwwicfs-meorg Worldwide Society of Wolfram Syndrome Families httpwwwwolframsyndromeorg Working for A World Without Leprosy httpwwwileporguklinks World Craniofacial Foundation httpwwwworldcforg World Federation of Hemophilia httpwwwwfhorgenpageaspxpid=492 World Health Organization (WHO) Patient Support Groups Genome Resources httpwwwwhointgenomicspublicpatientsupportenindexhtml Worldwide Lichen Sclerosus Support httplichensclerosusorg Xanthinurea (Information) httpemedicinemedscapecomarticle984002-overviewshowall XP Family Support Group ( Xeroderma Pigmentosum) httpwwwxpfamilysupportorg XLH Network (X-Linked Hypophospharemia) httpxlhnetworkorg Yaws and Other Endemic Treponematoses (World Health OOrganization) httpwwwwhointyawsen Yellow Fever Nail Syndrome httpwwwsciencedirectcomsciencearticlepiiS1081120610615219 Yolk Sac Tumor httpwwwpatientcoukdoctorTesticular-Tumourshtm Yunis Varon Syndrome httpwwwaskcomwebl=semampifr=1ampqsrc=999ampq=Yunis20Varon20Syndromeampsiteid=14214ampo=14214ampar_uid=5D5D0C61-ADC1-4792-83E7-B66AAD6B6987ampclick_id=11F6FCEB-D7D1-49D6-9179-E9C7CCB376C0 Zadik Barak Levin Syndrome httpwwwpatientcouksearchaspsearchterm=Zadik+Barak+Levin+Syndromeampsearchcat=gm Zap-70 Deficiency (UpToDate) httpwwwuptodatecomcontentszap-70-deficiency Zazam Sheriff Phillips Syndrome httpwwwcheckorphanorgresearchviewzazam-sheriff-phillips-syndromepage1 Zellweger Baby Support Network httpzbsnorg Zellweger Support Group Indian Patient Foundation httpwwwpatientorgingroupzellwegersyndrome Zellweger Syndrome Support Group Daily Strength

httpwwwdailystrengthorgcZellweger-Syndromesupport-group Zlotogora Syndrome httpwwwexperienceprojectcomgroupsHave-Zlotogora-Syndrome90875 Zollinger-Ellison Forums httpwwwmdjunctioncomforumszollinger-ellison-syndrome-discussions