World Rare Disease Day 2015 Planning Webinar:

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

December 9, 2014 – 11:00 am PT

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To Eliminate the Challenges of Rare Disease Globally

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@globalgenes.org

Awareness leads to Funding Funding leads to Research

Research leads to Treatment Treatment leads to HOPE

The Facts

About World Rare Disease Day

Background: • First launched by EURODIS and its partners in February 2008* • Over 84 countries participated in events in 2014*

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 – 2016!

Raise general public, media, industry, and legislative awareness for: • Rare diseases • Improved access to treatments and therapies • Improved physician understanding of rare 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 disease awareness, this ribbon helps unify a fractured community of thousands of small diseases that lack a collective voice.

• 2011: 20,000 ribbons were distributed • 2014: 150,000+ ribbons were distributed • 2015: 200,000+ ribbons anticipated worldwide!

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

Jeans, Genes, and Hope!

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 Ideas

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

• 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

Event Ideas for Schools and Universities

Rare Disease Day Program • Age-appropriate understanding of genetics and rare diseases • Encourage rare families to share their story • All staff and students to wear jeans and the Denim Ribbon • Possible fundraiser: Each staff member donates $5 to wear jeans that day

Denim Designs Art Activity • 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.

Event Ideas for Groups

Denim Scavenger Hunt • Work with student organizations (clubs, Greek, etc.) to

create a fun and informative events for college kids. • 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.

Wear That You Care – and Share! • 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: $5 to wear jeans at work

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.

Rare Jeans • Decorate, paint, bedazzle jeans • Make them unique and rare • Can partner with schools, local clubs, sports teams,

and other organizations • Wear on Rare Disease Day

More Event 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)

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)

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

State Events: • Host an event at your state capital • Events in the works for Utah (UtahRARE.org), California, Connecticut and 12 other states – need all

50 represented!

More Event Ideas

Resources

• NIH Middle School Curriculum for Rare Diseases http://science.education.nih.gov/customers.nsf/MSDiseases.htm

• Genetics 101 from 23andme https://www.youtube.com/playlist?list=PLF9969C74FAAD2BF9

• Rare Disease Facts and Statistics http://globalgenes.org/rare-diseases-facts-statistics/

• RareDiseaseDay.us http://rarediseaseday.us

• Order Denim Ribbons http://globalgenes.org/blue-denim-genes-ribbon/ (Order early!)

Social Media Campaign

Download at http://globalgenes.org/world-rare-disease-day

Twitter and Facebook Cover Photos

Profile pictures for all social media, including Facebook, Twitter, and Instagram

Hashtags: #WRDD2015 and #CareAboutRare

Social Media Campaign

Customize at Canva.com, Picmonkey.com, and Pixlr.com

Denim Dash Virtual 5K Run

• Run in your own community • Create a team, run on a treadmill, design your

own 5k course • Physical 5K event to be held in Long Island,

New York, on April 18, 2015

Registration will open Early 2015. Bibs and Packets to be sent to each participant

Announce that you are joining the race or launch your team on Rare Disease Day!

World Rare Disease Day Grand Rounds

What are Grand Rounds?

• They are educational programs for physicians and other healthcare professionals, usually with CME credits at academic medical centers

GG Grand Rounds Plans for 2015:

• Currently in planning stages for 5-7 Children's Hospitals nationwide

• Primary Audience: General pediatricians • Goal: To bring awareness of rare disease

prevalence, updates on identification, research, and resources for physicians

• Launching in partnership with Corporate Alliance (HCP Outreach Committee) and new Medical Scientific Advisory Board

Do you want to help initiate the conversation, so one gets put together at your local teaching hospital? Please contact Katie Mastro, for more information: katiem@globalgenes.org

Bringing the World Together to

Give to RARE Disease

How It Works

www.giverare.org

Central site to drive excitement 1

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Each rare disease charity sets up their own donation page

Charities compete for matching funds and

prizes on Tuesday, March 3, 2015

$12.8 Million

The Results Are In – Giving Days Work

$1 Million

$12.8 Million

$53 Million

$13 Million

$20 Million

Rare Charity Benefits

1. Find new donors – 25% to 35% new donors and 25% lapsed donors 2. Increase fundraising and awareness – Opportunity to raise more funds and

highlight programs 3. Matching funds – Access to a Sponsor Prize Pool for extra donations 4. Timing works well – Mar. 3rd is after EOY fundraising and before main

fundraising in April/May and Sept/Oct 5. Technology platform – Best of breed technology platform for free 6. Low effort – No t-shirts, hall rentals… Campaign materials already created (60% of non-profits in Washington reported spending less than 10 hours) 7. Benefit from Collaboration – The more rare diseases and people who

Participate, the larger the matching pool we will attract

More money, new donors, low effort

FAQs

1. When is the Giving Day? Donations are counted on Tuesday, March 3rd, 2015 2. Are tax receipts issued on behalf of the charities? Yes, tax receipts are issued

automatically via email on behalf of each charity. You have the ability to customize your tax receipt and thank you email.

3. What organizations are eligible? Any 501.3(c) dedicated or with a specific project dedicated to rare disease.

4. Is my data safe? Yes, the technology provider is PCI compliant and has run large giving days before.

5. Is my data private? Yes, each charity will only have access to their own donor data. 6. Is there an upfront fee to participate? There is no fee for charities. 7. Is there a transaction cost? Yes, there will be a 6.9% transaction fee (includes credit

card processing, technology, and management fees) 8. Where does the money go? The money raised (less trans fees) goes directly to each

registered charity. 9. How do I sign up? You can pre-register online at www.giverare.org 10. When does FULL registration open? Full registration opens on January 9th, 2015

Help Me Help You

1. Pre-Register today – www.giverare.org

2. Post online (twitter, facebook) #giveRARE

3. Ask 3 other rare disease groups to pre-register

Bringing the World Together to

Give to RARE Disease

o Designed to be a clearinghouse and advocacy center for all Rare Disease Legislation

o Provides resources, tools for individuals and organizations

o All events and resources are free and open to the entire Rare Disease community

o Program of the EveryLife Foundation for Rare Diseases (501c3 public charity)

www.RareAdvocates.org

About RDLA

o Monthly meetings/calls to discuss pending legislation

– Agenda is open for all organizations to contribute

o Helps coordinate the Rare Disease Congressional Caucus

o In-District Lobby Days during summer recess

o Lobby Day during Rare Disease Week in D.C.

– 1st Lobby Day in 2012 – 70 Advocates on the Hill

– 2nd Lobby Day in 2013 – 150 Advocates on the Hill

– 3rd Lobby Day in 2014 – 165 Advocates on the Hill

RDLA Programs

o 165 Patient Advocates

o 20-30 Industry Representatives joining us for the Conference

o More than 60 different patient organizations/diseases represented

o Industry Sponsors in the past have included:

Who Attends Rare Disease Week on Capitol Hill?

o When: February 23rd – 27th

o Who: Rare disease patients, their families, caregivers, & advocates

o What: A week’s worth of events aimed at amplifying the voice of rare disease patients in D.C.

o Where: Washington D.C.

o Cost: FREE* to attend

*Travel Scholarships Available

Event Details

o At Carnegie Institution for Science

o 5:30 pm: Cocktail Reception 7:00 pm: Documentary screening featuring the film,

8:30 pm: Panel Discussion

Monday: RDLA’s 5th Annual Rare Disease Documentary

Screening and Cocktail Reception

o FHI 360, 1825 Connecticut Ave NW #2, Washington, DC (near DuPont Circle)

o Legislative Conference includes: – Issue and advocacy training – Information on the 114th Congress – Receive materials: one-sheets, Hill meeting schedule,

talking points – Coffee, breakfast & lunch

Tuesday: Legislative Conference*

*You must attend the Conference to attend the Lobby Day

o Women’s Democratic Club

– 1526 New Hampshire Ave NW, Washington, DC 20036

7:00 am Breakfast buffet open

o 7:30 am Lobby training begins

o Meetings scheduled from 9:00 am - 5:00 pm

– Dress Professionally

– Wear Comfortable Shoes

Wednesday: Lobby Day

Title & Location - TBD

Goals for Rare Disease Caucus Briefings:

o Provide Congressional Staff with an understanding of our legislative needs

o Relationship building and networking with staff

o Raise rare disease awareness

– Attract media

Thursday: Congressional Caucus Briefing

Rayburn Foyer 5:00 pm – 7:00 pm

Showcasing the art of the Rare Disease Community

Thursday: Rare Artist Reception

o 9000 Rockville Pike Bethesda, MD

o Masur Auditorium (Building 10)

o Friday 8:30 am to 3:00 pm

o The event will also be available via webcast

o Attendance is free and open to the public

o The event features tours, presentations, posters, and exhibits from the rare disease research community.

o The NIH is a short walk from the Metro Medical Center station*

*Please allow approximately 30 minutes for passing through NIH security. All visitors will be required to show valid government-issued identification to access the NIH campus

Friday: Rare Disease Day at the NIH

Embassy Row Hotel 5 min walk from Dupont Circle Metro

Travel and Hotel Information

2015 Massachusetts Ave NW, Washington, DC 20036

Visit the link on: www.RareAdvocates.org/rdw to reserve a discounted room on the Rare Disease Week block today

Travel Stipends Available Visit www.everylifefoundation.org/travel-scholarship-application for more details

o If for ANY reason, you or someone you know with a rare disease cannot make it to Rare Disease Week on Capitol Hill, The EveryLife Foundation still wants your voices to be heard

o Please share your story with the Foundation and we will make sure it is hand delivered to your representative in D.C.

o Submit your Rare Story here:

http://rareadvocates.org/rdw/patientstories/

Share your Story!

For all the information listed on this presentation, go

RareAdvocates.org/rdw

Contact Information:

Andy Russell Associate Director of Advocacy and Government Relations

EVERYLIFE FOUNDATION FOR RARE DISEASES

arussell@everylifefoundation.org

77 Digital Drive • Suite 210 • Novato, CA • 94949 Office: 415-884-0223 • Fax: 415-884-0562

www.EveryLifeFoundation.org www.RareAdvocates.org

Questions?

Ilana Jacqueline Managing Blog Editor

Global Genes

Publicity and Media PR

• With competing stories, the goal is to make getting your story out there as easy as possible for producers and journalists. You want to “package” your story for easy sharing.

• Let your contacts know that you have a source for interviews, a page with background information, and history of your organization and it’s mission. Recognize that reporters need more than a date and an event– they need the whole story.

Packaging a Story for Journalists, Reporters

Crafting a story for Journalists, Reporters

• What makes WRDD exciting is the people behind it. Choose a “human element” to go with your story.

• Consider what kind of media you want to attract. Local? National? Trade? Community-based?

For example: This would be a great story to pitch to local news editors as it highlights a person in the community.

• 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 with whom you can collaborate or use as your “expert source”

You May Also Consider:

• Asking other local families with rare disease to also share their story 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

• Make sure to spellcheck 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

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.

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.

Distributing Your Press Release

• Make sure to announce your event/campaign on Twitter

• You can include the hashtag #WRDD2015

• You can also include hashtags specific to your disease

Social Media: Twitter

• Ask friends and followers to retweet you

• Retweet others with the #WRDD2015 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 status, you may also want to post in related groups or pages

Social Media: Facebook

Global Genes Store – Coming Jan. 2015

Bracelets Stickers Decals Magnets Key Chains Pins Hats Necklaces Tattoos

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 13th • International mailing address - February 6th

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 2015

Facebook • Profile picture change (February 1 to March 31) • I Heart Someone Rare and Wear That You Care Photos (February 15 to March 31)

Twitter / Instagram / Facebook • Tag @GlobalGenes on photos, event updates, and stories • Use hashtags: #CareAboutRare and #WRDD2015 • 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

Contact Information

For more information:

Carrie Ostrea – carrieo@globalgenes.org Advocacy Director

Ashley Girtman – ashleyg@globalgenes.org

Blue Denim Genes Ribbon™ Program

Katie Mastro – katiem@globalgenes.org Grand Rounds Program

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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