World Rare Disease Day 2014 Planning Webinar:

Ideas and Suggestions to Host Your Own World Rare Disease Day Event

December 11, 2013 – 11:00 am PT

Moderated by: Carrie Ostrea, Advocacy Director

Global Genes | RARE Project www.globalgenes.org

Our Mission

Global Genes | RARE Project is a leading global rare and genetic disease patient advocacy organization.

We work to build and unify the global rare and genetic disease

community and positively impact patients in their lifetime by offering programs designed to educate, empower, and support patients, advocates,

foundations, and other rare disease focused organizations.

Our RARE Webinar Series is

Answering Questions

Through the Question and Answer (Q&A) feature, please direct your questions regarding today’s topic to this webinar’s Moderator, Carrie Ostrea. Questions will be answered after the presentations from our panelists. If you have any technical difficulties, please direct your questions and concerns to this webinar’s Host, Katie Mastro, through Chat, Q&A, or email: Katiem@rareproject.org

Importance of Rare Disease Awareness

About World Rare Disease Day

Background: • First launched by EURODIS and its partners in February 2008* • Over 70 countries participated in events in 2013*

Why February 28th this year? • Rare Disease Day is held on the last day of February • Celebrated February 29th, the rarest day of the year

Raise general public, media, industry, and legislative awareness for: • Rare and genetic diseases • Improved access to treatments and therapies • Improved physician understanding of rare and genetic conditions • Public support for the millions of people fighting rare diseases

* Facts provided by rarediseaseday.org

Jeans, Genes, and Hope– A Natural Fit!

Blue Denim Genes Ribbon™: Global Genes promotes its mission with a unifying symbol of hope.

Considered the universal symbol for rare and genetic disease awareness, this ribbon helps unify a fractured community of thousands of small diseases that lack a collective voice.

• 2012: 45,000 ribbons were distributed • 2013: 100,000 ribbons were distributed • 2014: 150,000+ ribbons anticipated

“100 denim ribbons for my sister’s rare disease…HOPE”

Jeans, Genes, and Hope!

Wear That You Care™

Global Genes will promote two #hashtags leading up to World Rare Disease Day 2014 to raise awareness for rare and genetic diseases:

#CareAboutRare

#WRDD2014

We encourage partners, advocates, and supporters to include these #hashtags in press releases and other materials to employees or their constituents to use on World Rare Disease Day 2014.

Download graphics from GlobalGenes.org.

• Instagram and Twitter: #CareAboutRare, #WRDD2014, @GlobalGenes

• Facebook profile pictures and photo sharing

Types of Rare Disease Day Events

Event Types:

• Educational institution (school, university, etc.) • Community (public, family, club, etc.) • Business (small and medium sized) • Corporate (large businesses) • Legislative (federal, state, and local awareness

initiatives)

Event Considerations

Awareness • Patient specific • Specific disease • General rare disease community

Fundraising • Who does the money go to?

• Rare disease specific organization • Support organization (non rare disease specific) • Patient’s family • Global Genes | RARE Project

• If supporters wish to make a tax-deductible donation, receiving organization must be 501(c)(3)– use Guidestar or Charity Navigator to verify

• How will the money be collected?

Other Considerations: • Permit or other type of authorization needed to host event • Publicity: how to spread the word about your event

Julie Cunningham

Education/Business Event Ideas

Event Ideas: Educational Institutions

Little Miss Hannah’s “Jeans for Genes Day”

Three local Las Vegas elementary schools dedicate one hour of school for rare disease awareness activities, annually since 2011.

Awareness: • 30 minutes of age-appropriate genetics education • 30 minutes for students to create “cards of hope” • Share a personal story of a local child with a rare disease • But focus on all rare diseases affecting children and the

acceptance of disabilities • Encourage participants to wear jeans and “Genes™ ribbons” • Parent letter is sent home with each student explaining the day

Fundraising: • Can be a fundraising event (by asking staff and/or children to pay

$1 to $5 to wear jeans that day)

• Distribute Jenes, Genes, and Hope coloring page for students to color/decorate at home (download at http://globalgenes.org/?wpfb_dl=104)

• Encourage creative ways they can make their pair of jeans look unique or rare

• Hang completed pictures in the office or around the school • Winners for different grade levels or group winners K-3, 4-6, etc. • Work with PTA to provide a pizza party or other incentive for

classes that have the most participation • Announce winners on Rare Disease Day • All participants will receive some type of collateral (Genes™

ribbons, stickers, bracelets, etc.)

Possible fundraising ideas: • Let kids vote for favorites using coin jars

Denim Designs

• Work with student organizations (clubs, Greek, etc.) to create a fun and informative events for college kids.

• Begin with a 5-10 minute lecture about rare diseases and/or have flyers & information available at booths around event.

To organize a “Denim Dash”: • Students must wear jeans. They race around a designated area in search of

denim ribbons hidden and try to collect the most within a given time frame. • The group or individual that collects the most wins a denim trophy/award. • Conclude activity with a celebration, music, food, etc. • Encourage athletic department to participate, as this would encourage more

student participation if they were racing against school athletes.

Denim Dash – University

• Reach out to your co-workers, medical care team, or building management and invite them to participate by wearing jeans and ribbons.

• Distribute flyers, informational letters, and/or genes™ ribbons to help spread awareness

• Request a group photo of their colleagues wearing jeans and ribbons.

• Share their event and photos and encourage others to join in.

Possible fundraiser:

• Ask employees to pay $5 to wear jeans on Friday, February 28, or $20 to wear jeans all week.

Wear That You Care… and Share!

Don’t have the time or ability to create an event for 2014? No worries! • Simply reach out to those you know and ask the to support WRDD

by wearing jeans and ribbons. • Drop of informational note/flyer explaining Rare Disease Day and

the Jeans, Genes, and Hope campaign. • Solicit support from local businesses, service vendors, or places where

you and your family go. • Reach out to playgroups, church groups, book clubs, kids sports teams,

gyms, libraries, dentist offices, hair salon, dry cleaner, nail place, any place in your community.

• Reach out to people in your neighborhood, on your Christmas card list or friends on social media inviting them to participate in Rare Disease Day.

Important: Be sure to get your ribbon orders in early to ensure delivery before Rare Disease Day!

You can Raise a-RARE-ness

• Jeans and Colored-shirt Photos:

Encourage everyone to wear jeans and a specific color or company shirt with genes™ ribbon

• Care about Rare party: Provide information on rare disease (specific story works best to start conversation), include blue drinks and desserts (like cupcakes, cake, and candy)!

• Lunch and Learn: Invite rare families to share experiences during lunchtime office event.

Other Business Ideas

Human DNA chain!

Cassie Johnston Alstrom Angels

Community Event Ideas

Instagram’s February “Rare Photo-a-day Challenge”

• Raise Awareness

• Submit to various contests

Use Hashtags: #CareAboutRare #WRDD2014

Photos from www.facebook.com/GlobalGenesProject

Care About Rare Party

• Offer blue drinks, food, ribbons, etc.

• Hold at a private venue or a local restaurant.

• Can be a fundraiser (by charging an entry fee, having restaurant donate % of proceeds, etc.)

Photos from www.GlobalGenes.org

“Rare Genes/Jeans”

• Decorate, paint, bedazzle jeans

• Make them unique and rare

• Can partner with schools, local clubs, sports teams, and other organizations

• Decorate before Rare Disease Day

• Wear on Rare Disease Day!

• Can be a fundraiser

Photo from www.GlobalGenes.org

Rare Disease Forum

• 1-2 medical speakers

• Possible break-out for rare patients and/or parents

• Can be held at local medical office or other gathering area

• Can be a fundraiser (by charging a registration fee)

Photos from www.facebook.com/GlobalGenesProject

Family-Friendly Event (Carnival)

• Food, music, games, jeans, and ribbons.

• Can be a fundraiser (by charging admission, selling food, selling event and awareness t-shirts, etc.)

Photos from www.GlobalGenes.org

“Care about Rare” Video

• Encourage rare family, friends, medical staff to say:

“I care about rare”

• Wear blue jeans and Genes ribbon

• Compile into 1 promotional video with messages

• Distribute to local media and through social media

Photos from www.GlobalGenes.org

Jeans, Genes, and Hope Day Race

• Participants run in jeans

• Can be an obstacle course race

• Can be a fundraiser (by charging a registration fee, participants getting pledges for the number of times they complete the course, etc.)

Photos from www.GlobalGenes.org

Other Community Ideas

It’s in Our Jeans: • Partner with a local retailer that sells or specializes in denim • Have them hand out ribbons on Rare Disease Day • Could be a fundraiser (if they contribute a portion of the sale of the jeans)

“Baby’s Got Her Blue Jeans On” Natural Beauty Pageant: • Hosted to help raise awareness for rare diseases • Participants wear denim-inspired outfits • Can be a fundraiser (by charging a fee to enter the pageant)

Jeans, Genes, and Hope Fashion Show: • Local stores sponsor and lend jeans to be worn during the fashion show • 30 minutes will be spent discussing the effect of rare diseases on individuals and families worldwide

Care about Rare Recipe Exchange (like a cookie exchange): • Make a “rare” dish and bring copies of your rare recipe to share with other guests • Could be a fundraiser (by taking recipes and putting them into a book to sell to friends and family after the

event)

Denim Consignment/Yard Sale: Hosted to help raise money and awareness for rare diseases

Bracelets of Hope Decorating Party: To be sold as a part of a fundraiser or donated to local rare clinic

Blue Cake with Ribbon Decorating Contest

Legislative Events for Rare Disease Day

Julia Jenkins Director of Government

& Public Relations EveryLife Foundation For Rare

Diseases

julia@rareadvocates.org

Legislative Events for Rare Disease Day

Rare Disease Events in DC - 4 Full Days of Events!

Tuesday, February 25th:

• Legislative Conference (8:15 am - 4:30 pm)

• RDLA’s 4th Annual Rare Disease Day Documentary Screening & Cocktail Reception (5:30 pm – 9:30 pm)

Wednesday, February 26th:

• Lobby Training Breakfast (7:00 am - 8:30 am)

• 9:00 am – 5 pm Capitol Hill Meetings

Thursday, February 27th:

• FDA Regulatory Law & Policy Workshop for Patient Advocates (8:00 am – 10:30 am)

• Rare Disease Congressional Caucus Briefing (11:30 am – 1:00 pm)

• State Delegation Hill Drop In Meetings

Friday, February 28th:

• RDD@NIH Rare Disease Day at the National Institutes of Health

Legislative Events in Washington D.C.

Only Lobby Day that invites all rare disease organizations & patients to participate together

• The events are free for patient advocates to attend

• Discounted hotel rates & travel scholarships are provided to help advocates attend

Advocates are becoming more involved!

• 2012: 1st Lobby Day – 70 patient advocates

• 2013: Legislative Conference & Lobby Day – 150 advocates

• 2014: 3 Day Event – Goal of 200 Advocates

Lobby Day in Washington D.C.

Tuesday, February 25th Legislative Conference

• National Press Club, 529 14th Street NW (Near the White House & Metro Center) 8:15 am – 9:00 am Registration & Breakfast 9:00 am – 3:30 pm General Session, lunch included 3:30 pm – 4:30 pm Lobby Day Issue Training & Soap Box Meeting “Schedule Overview”

• General Session Topics:

– State/Regional Organization & Advocacy

• Obama Care Implementation

• Newborn Screening

– Meet the Industry & Patient Orgs who influence legislation

– Insider’s view on the 2014 Midterm Elections

• You must attend the Conference to participate in the Lobby Day

Legislative Conference in Washington D.C.

Wednesday, February 26th Lobby Day

• 7:00 am - 8:30 am Lobby Training Breakfast

• Top of the Hill, Reserve Officers Association

– One Constitution Avenue, NE Metro stations are conveniently located both 2 blocks south and north of the venue at Capitol South (Blue and Orange Lines) and Union Station (Red Line) – within walking distance to the House & Senate meetings

• 9:00 am – 5:00 pm Capitol Hill Meetings with Members of Congress & Congressional Staff

Lobby Day in Washington D.C.

Thursday, February 27th State Delegation Hill Meetings New This Year ***Optional Day

• Advocates who wish to drop by Congressional Offices and attend meetings on behalf of fellow advocates in their States who are too sick or unable to come to DC

• With the help of Global Genes | Rare Project, we will be collecting stories from rare disease patients across the US to hand deliver to their Member of Congress

• Our goals are to:

– Let every Member of Congress know that there are rare disease patients living in their districts who deserve Congress’ attention

– Give those advocates who cannot make the trip to DC an opportunity to be heard by Congress

Legislative Events for Rare Disease Day

• Funding for scholarships is limited and is directed to ensure that a diverse representation of advocates are able to participate

• Only available for those outside of the DC metro area

• One per family member / US residents only

• Maximum award is $600.00

• Must attend both the Legislative Conference & Lobby Day

• Scholarship recipients will be announced on January 24th

– Checks will be available to pick up during Legislative Conference Registration

– Recipients will be required to present a valid ID, Social Security Number & sign for the check

• Apply at: http://rareadvocates.org/travel-scholarship-application/

Travel Scholarships

• Hotel Room Block: Embassy Row Hotel Dupont Circle, on the Red Metro line, 2015 Massachusetts Ave, NW

• $149/night single $169/night double + 14% DC Tax

• Book your hotel online or Call (202) 939-4208 & ask for the EveryLife Foundation Room Block

• Complimentary internet in guest rooms; complimentary breakfast

• There are a limited number of rooms available at the discounted rate

• Discounted rates expire on Monday, February 3rd

Hotel Information

Tuesday, February 25, 2014

• Carnegie Institution of Science

– 1530 P Street Northwest (near Dupont Metro)

• Food & drinks will be served from 5:30-7:00 pm

• 7:00 pm Movie Screening, 8:30 pm Panel Discussion

• The event is free & open to the public

• We encourage you to wear jeans to support Global Genes

RDLA’s 4th Annual Rare Disease Day Cocktail Reception & Movie Screening

Legislative Events in Washington D.C.

EveryLife Foundation for Rare Diseases Workshop on FDA Regulatory Law & Policy

Thursday, February 27th

• 8:00 am – 10:30 am Breakfast

• Embassy of Greece

– 2217 Massachusetts Ave NW, (near Dupont Circle)

• Hear from Advocates, Industry, Legal Experts & FDA

• Will cover topics such as Expanded Access, Compassionate Use and Emergency IND’s

• Registration coming soon

• Will be recorded & posted on the web as a resource

Legislative Events in Washington D.C.

Thursday, February 27th:

• 11:30 am – 1:00 pm, Lunch provided

• Capitol Visitors Center, Room: HVC – 201

• Opportunity for advocates to go inside the Capitol

• Goal is to educate Congressional Staff about rare disease legislative issues & highlight Rare Disease Day awareness

• Registration coming soon

Rare Disease Congressional Caucus Briefing

Legislative Events in Washington D.C.

Friday, February 28, 2014:

• 7:30 a.m. Registration and Poster/Booth Set Up 8:30 a.m. - 5:00 p.m. Sessions

• 9000 Rockville Pike Bethesda, MD, a short walk from the Metro Medical Center station

• Organizations have booths & exhibits

• The event will also be available via webcast

• Attendance is free and open to the public https://events-support.com/events/NIH_Rare_Disease_Day_2014

Rare Disease Day at the NIH- Washington D.C.

Legislative Events for Rare Disease Day

For questions regarding the rare events in DC or how to get your local legislative representatives

involved, please contact Julia at

julia@rareadvocates.org

Ilana Jacqueline Managing Blog Editor

Global Genes | RARE Project

Publicity and Media PR

• Recognize that WRDD is a high priority for us, but not necessarily for them.

• Recognize that reporters need more than a date and an event– they need a story.

Crafting a Story for Journalists and Reporters

Crafting a Story for Journalists and Reporters

Choose a “human element” to go with your story.

• Names and details about your disease, diagnosis and treatment

• Rare disease’s effect on local/global community

• How did you get involved in the rare disease community?

• Is this your first event or fundraiser?

• What is your goal?

What to Mention in Your Pitch to Reporters:

• Reaching out to your physician or another local physician who treats rare diseases

You May Also Consider:

• Asking other local families with rare diseases to also share their stories with the reporter.

• Ex. Stories– “A day in the life of rare disease”

You May Also Consider:

• On our website, you’ll find a downloadable “fill-in-the-blank” press release

Writing a Press Release

• Remember to add a local element to your release, whether that’s a local event or a patient that lives in the community.

Writing a Press Release

• Make sure to spell check your release and have friends or family look over it for edits.

Writing a Press Release

• The easiest way to contact reporters is by doing a search for local newspapers and news stations, going directly to their website and finding the “contact us” page.

Contacting Reporters

• There may be a form there to submit press releases—or a staff page with contact information of reporters and staff.

Contacting Reporters & Distributing Your Press Release

• Still having trouble finding that reporter’s email? Try contacting them over Facebook or Twitter.

• Many reporters now rely heavily on tips from social media to get their stories.

Contacting Reporters & Distributing Your Press Release

• You can call reporters.

• Or send them an email with a short introduction and your press release copy & pasted into the body of the email.

• This is the preferred method as they won’t have to open any attachments.

Contacting Reporters & Distributing Your Press Release

• Make sure to announce your event/campaign on Twitter.

• You can include the hashtag #WRDD2014 and #CareAboutRare

• You can also include hashtags specific to your disease.

Social Media: Twitter

• Ask friends and followers to retweet you.

• Retweet others with the #WRDD2014 and #CareAboutRare hashtag

• Make sure to add links or pictures to your tweets.

• Follow and respond to tweets using search.twitter.com

Social Media: Twitter

• Besides posting your own statuses, you may also want to post in related groups or pages.

Social Media: Facebook

Amy Grover Operations Director

Global Genes | RARE Project

Global Genes Store

Global Genes Store

Bracelets

Stickers

Decals

Magnets

Key Chains

Pins

Order online at www.globalgenes.org/shop. For bulk or large orders, email shop@rareproject.org.

Blue Denim Genes Ribbons ™

Genes Ribbons™ are made available to all partner organizations, foundations, advocates and other supporters of our global movement. http://globalgenes.org/blue-denim-genes-ribbon/ Order Deadline for ribbons for Rare Disease Day • U.S. mailing address - February 20th • International mailing address - February 7th

Getting Involved!

Share your event • Global Genes Website - http://globalgenes.org/world-rare-disease-day-event-submission-form/ • Rarediseaseday.org • Related Rare Foundation websites • Local media calendar/events section • Informational posters, flyers, and graphics will be available for download in January 2014

Facebook • Profile picture change (February 1 to March 31) • Wear That You Care Photos (February 15 to March 31) • Largest virtual Rare Disease Day event: https://www.facebook.com/events/157063967778405/

Twitter / Instagram • Tag @GlobalGenes on photos, event updates, and stories • Use hashtags: #CareAboutRare and #WRDD2014 • Assemble for a creative picture in jeans and the color blue, signs, etc. Post to social media. • Change your organization’s Facebook page profile or cover picture to include the Genes Ribbon™

and campaign

Upcoming Webinar

Upcoming Webinar: Fundraising Techniques for Rare Organizations

February 19, 2014 – 11:00 am PT

Register today at http://www.globalgenes.org/webinars

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Contact Information

For more information:

Carrie Ostrea Advocacy Director

carrieo@rareproject.org

Ashley Girtman Blue Denim Genes Ribbon™ Program

ashleyg@rareproject.org

Slides and video from today’s presentation will be made available on our website at http://www.globalgenes.org/webinars within the next few days.

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World Rare Disease Day 2014 Planning Webinar:

Ideas and Suggestions to Host Your Own World Rare Disease Day Event

Moderated by: Carrie Ostrea, Advocacy Director

Global Genes | RARE Project

Thank you for attending!