Costello - Morning Tutorial on Social Media - RARE CONNECT

RARE CANCERS COMMUNITIES PARTICIPATING IN THE RARECONNECT.ORG PROJECT

ECCO/ESMO STOCKHOLM 2011

Denis Costello

Web Communications Officer, EURORDIS

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www.rareconnect.org

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12 Communities live

Launched in April 2010

Jan 2011

Feb 2011

March 2011

March 2011

April 2011

April 2011

April 2011

May 2011

May 2011

Sept 2011

Sept 2011Multiple Myeloma

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Myeloma Community

Patient testimonialsUser Generated Content

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Myeloma Community

Online discussion in several languagesMore like a stream of conversation than a forum

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Myeloma Community

Breaking down the language barrierOn-demand human translation

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Myeloma Community

Social Networking functionalityVirtual profile

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Involvement of 64 Patient Groups from 22 countries

• NOMID Alliance• AMWS/CINCA• VHL Family Alliance International• German Assoc. for VHL Families• Danish Assoc. for VHL• Alianza española de familias de VHL• VHL France• A Magyar VHL Társaság• Dutch VHL Organization• Canadian CAPS Network• VHL Contact Group U.K.• AIFP• Stichting FMF-Community Nederland• AFFMF• FMF Montreal• AKU Society UK• Alcaptonurie France• findAKUre• Foundation for Children with Atypical

HUS

• AIRG• Argenina VHL Assoc.• SIMBA Italy• Ass. Française de Behçet• As. Española de Behçet• DebRA International• DebRA Belgium• DebRA Croatia• DebRA UK• DebRA Austria• EB-Haus Austria• UK Behçet’s Syndrome

Society• DEBRA España• DebRA Canada• Fundación DEBRA México• AHC Assoc. Iceland• A.I.S.EA• AESHA• AHC Foundation• L’aim AKU

• DebRA Norway• DebRA Italy• Cystinosis Support Australia• Cystinosis Foun. France• Cystinosis Support Germany• Cystinosis Foun. Ireland• Mexican Cystinosis Association• Cystinosis Group Netherlands• Cystinosis Foun. UK• Cystinosis Foun. USA• Cystinosis Research Network• South Africa Support Group• Cystinosis Research Foundation• Danish HSP Assoc.• A.SL-HSP France• Spanish HSP Assoc.• Italian Assoc. for Living with SP• Holland Asoc. of Neuromusc.

Disease• Spastic Paraplegia Foundation

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The investment from EURORDIS

68 hours of webinars to NORD & EURORDIS membership (group and individual)

25 days of attendance at conferences International AutoImmune Congress Orphanet Patient Association Forum European Hematology Congress Visit to NORD

Accompaniment through involvement process 4 workshops (Krakow, Amsterdam x 2, Paris) Presentations to Council of European Federations, ERTC,

Summer School

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Funding

Public/Private funding model

Charitable organisation and Public Health funders - 2010

Private funders - 2010 through the EURORDIS/NORD Corporate partnership for Social Media. All private funding is fully independent (funders exercise no influence on decisions related to the platform).

Patient Disease Management tool

Patient reported outcomes:

- Treatments- Side effects- Quality of Life

Compare side-effects over time & against aggregated data from other patients

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Q & A

Thank you!You can also email me:

denis.costello@eurordis.org