2016 Planning Webinar. Tuesday, December 15, 2015

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1 2016 Planning Webinar Tuesday, December 15,

2 How to Ask Questions Please submit your questions through the Q&A feature on the bottom of your screen. Questions will be answered at the end of the webinar during the Question & Answer Session. If you have any technical difficulties, please direct your questions and concerns to Amanda Knitter at 2

3 Webinar Topics About Global Genes What s World Rare Disease Day How to Get Involved Ideas for Local Events What's Happening Across the Country? How to Tell and Share YOUR Story What's New? RAREHouse 3

4 2016 WRDD Planning Webinar Presenters Kym Kilbourne Vice President, Patient Advocacy Carrie Ostrea Manager, Patient Advocacy Jaymie Rodems Manager, Marketing & Communications Amy Grover Director, Operations

5 2016 WRDD Planning Webinar Kym Kilbourne Vice President, Patient Advocacy

6 Who is Global Genes? To Eliminate the Challenges of Rare Disease. 6

7 Who Is Global Genes? 7

8 RARE Disease Facts 8

9 RARE Disease Facts 9

10 Global Genes Resources

11 2016 WRDD Planning Webinar Carrie Ostrea Manager, Patient Advocacy Parent Advocate

12 About World Rare Disease Day Monday, February 29 th, 2016 Each year World Rare Disease Day is held on the last day in February is LEAP YEAR so World Rare Disease Day will be the rarest day of the year.

for: Rare diseases Improved access to treatments and therapies Improved physician understanding of rare

13 About World Rare Disease Day Background: First launched by EURODIS and its partners in February 2008* Over 84 countries participated in events in 2015* 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 13

14 How To Get Involved Jeans, Genes, and Hope! Global Genes promotes its mission with a unifying symbol of hope the Blue Genes Denim Ribbon 2015: Over 200,000 ribbons distributed for 1,100+ events! 14

15 Types of Rare Disease Day Events Event Locations 1. Educational institution 2. Community 3. Business 4. Legislative (local state federal) 15

16 Event Purpose Raising Awareness for: Patient Centered Specific Disease Centered Rare Disease Overall

17 Event Goal 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? 17

Event Ideas - Educational Locations World Rare Disease Day Program Age-appropriate

All staff and students to wear jeans and the Denim Ribbon Possible fundraiser: Each staff

ways they can make their pair of jeans look unique or rare Hang completed pictures in the

18 Event Ideas - Educational Locations World 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. 18

Event Ideas - 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.

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.

19 Event Ideas - 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 19

cupcakes, cake, and candy)! Lunch and Learn Invite rare families to share experiences during lunchtime office event.

20 More Event Ideas 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 20

specialists about rare disease sharing their story, rare disease facts, and the importance of diagnosis State Events Host an

21 More Event Ideas Partner with Retail Store to Share Ribbons and Awareness Collaborate with a local store, restaurant, or office to promote February 29 th as Rare Disease Day Grand Rounds at Local Hospital Rare patient advocates educating medical specialists about rare disease sharing their story, rare disease facts, and the importance of diagnosis 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! 21

30 minutes of age appropriate education on genetics, disabilities, and compassion 30

22 More Event Ideas Little Miss Hannah s Jeans for Genes Day o Every year since 2011 at 3 Las Vegas area Elementary Schools o Last hour of school dedicated to WRDD activity 30 minutes of age appropriate education on genetics, disabilities, and compassion 30 minutes for each child to design a card of hope to be given to a local rare family

23 More Event Ideas Rare Disease Day at Las Vegas Show 2015 Kops 4 Kids on Rare Disease Day 2013

Share Your Event Submit your event to Global

Location info, organizer s contact info and/or

24 Share Your Event Submit your event to Global Genes! Global Genes will regularly update the list of events promoted on our website: Public events: Location info, organizer s contact info and/or website to encourage greater attendance Private events: Will not include attendance information 24

Rare Disease Week in Washington D.C. Monday, February 29, 2016 Rare Disease Day at the National Institutes of Health Rare Disease Week in Washington D.C. Sponsored by the National Center for Advancing Translational Sciences and the National Institutes of Health Clinical Center The program runs 8:30 a.

25 Rare Disease Week in Washington D.C. Monday, February 29, 2016 Rare Disease Day at the National Institutes of Health Rare Disease Week in Washington D.C. Sponsored by the National Center for Advancing Translational Sciences and the National Institutes of Health Clinical Center The program runs 8:30 a.m. to 3:30 p.m. on NIH's main campus in Bethesda, MD. It is free and open to the public. Visit: 25

26 Rare Disease Week in Washington D.C. February 29 to March 3, 2016 Events hosted by RDLA, a program of the EveryLife Foundation for Rare Diseases Monday, February 29, 2016 Rare Disease Documentary Screening & Cocktail Reception at U.S. Navy Memorial Tuesday, March 1, 2016 Legislative Conference at FHI 360 Wednesday, March 2, 2016 Lobby Day Breakfast at the Capitol Hill Club and Capitol Hill Meetings Thursday, March 3, 2016 Congressional Caucus Briefing at the Capitol Visitor Center & Rare Artist Reception in the Rayburn House Office Building For information, please go to 26

27 Rare Disease Week in Washington D.C. Key Dates Event Registration Registration is required for RDLA events they are free and open to the public. Registration opens in January. The goal is to have advocates in all 50 states and Puerto Rico attend. Travel Stipends RDLA has a limited number of travel stipends available for advocates. Visit the website to apply by December 31, Advocates will be notified in early January. Go here: everylifefoundation.org/travel-scholarship-application/ Patient Stories If you are unable to join the activities on Capitol Hill, you can submit your unique patient story by February 15. Your story will be hand-delivered to your Member of Congress. Go here: rareadvocates.org/rdw/patientstories/ For information, please go to 27

28 Rare Disease Week Across the U.S. Kansas City RareKC Collaboration; University of Kansas, Children s Mercy, Genetics Center, Stowers Institute, Turner Syndrome Global Alliance, CF Foundation are coming together to build a comprehensive rare disease support effort and will be hosting a symposium at the Kaufmann Foundation Monday Feb 29. Global Genes will be participating as KC turns Denim Blue in support of rare disease. Sanford Burnham in La Jolla CORDS in South Dakota University of Southern California Keck School of Medicine 28

29 2016 WRDD Planning Webinar Jaymie Rodems Manager, Marketing & Communications

30 Tell Your Story

31 Make It Great 1. Less is more *Top 5 important parts 2. Get to the heart of the story 3. Connect with people 4. Grab attention

32 Put It In Context The bigger picture makes your story RELATABLE to the audience. Numbers help make your story CREDIBLE. Context makes your story IMPACTFUL.

33 Share It

Use Hashtags #WRDD2016 #CareAboutRare http://www.mustansariqbal.

34 Use Hashtags #WRDD2016 #CareAboutRare

35 Create a Cover Twitter and Facebook Cover Download at: Profile pictures for all social media, including Facebook, Twitter, and Instagram

36 Create an Event

37 Create an Event

38 Pitch It

39 Pitch It Remember to make it a great story: Less is more *Top 5 important parts Get to the heart of the story Connect with people Grab attention Frame yourself as the local expert. Share statistics that resonate with the general public.

40 Use Resources

41 You Can Do It! 1. Telling your story is important. 2. Use social media will amplify your message. 3. Hashtags are your friend. 4. Local news outlets want to hear from you 5. Global Genes has resources to support you.

42 2016 WRDD Planning Webinar Amy Grover Director, Operations

43 43

44 Questions & Answers 44

45 How to Ask Questions Please submit your questions through the Q&A feature on the bottom of your screen. Questions will be answered at the end of the webinar during the Question & Answer Session. If you have any technical difficulties, please direct your questions and concerns to Amanda Knitter at 45

46 46

To learn more, visit our website at Table of Contents

To learn more, visit our website at Table of Contents Team Leader: Guide About Immune Deficiency Foundation (IDF) Walk for Primary Immunodeficiency (PI) IDF Walk for Primary Immunodeficiency, an initiative of the Immune Deficiency Foundation, unites all members