Rare Disease Day

Looking for ways to take part in Rare Disease Day 2016?

In Advocacy by Freya SmaleLeave a Comment

Looking for ways to take part in Rare Disease DAY 2016? Well, here are 21 ways you can be involved this Rare Disease Day courtesy of our friends over at Rare Connect.

Original article can be viewed here - http://blog.rareconnect.org/uncategorized/21-ways-to-participate-in-international-rare-disease-day-2016/

1. Change your Facebook profile or cover image to the Rare Disease Day logo for the week
http://www.rarediseaseday.org/article/get-involved-download-our-communication-materials#social

2. Write letters to the local media that talk about Rare Disease Day and your disease. See this example from the Erdheim Chester Global Alliance http://ow.ly/sKVXE

3. Get your state, city, or local government to proclaim the last day of February every year as the official International Rare Disease Day
– Sample proclamation from United States http://ow.ly/sKWMa
– National proclamation Spain 2013 http://www.2013aeer.msssi.gob.es/actoPresentacion/infoActo/home.htm

4. Contribute to your favorite rare disease charity

5. Send a Tweet to @rarediseaseday or use the #raredisease

6. Organize an awareness raising desk in your hospital, city, office, or public area. Offer information, brochures, and coffee to people who are curious. Feel free to distribute the EURORDIS factsheets. Utilize volunteers from your association and friends to help you operate the desk and provide information to people on the day.


7.
 Hang up the Rare Disease Day poster in your home, office, or school
http://img.rarediseaseday.org.s3.amazonaws.com/2016/rddposter40x60.pdf

8. Attend an event or conference in your area
– Europe and International: http://www.rarediseaseday.org/events/world
– United States: http://rarediseaseday.us/events/events/

Not an event in your area? Why not start one.

9. Add your photo, video, or story to the official international Rare Disease Day website
http://www.rarediseaseday.org/tell-your-story/

10. Participate in the Handprints Across America event
http://rarediseaseday.us/take-action-now/handprints-across-america/

11. Become a friend of Rare Disease Day. Then tell a friend to do the same.
http://www.rarediseaseday.org/become-a-friend/

12. Raise and join your hands for rare diseases
http://www.rarediseaseday.org/join-your-hands/

13. Join EURORDIS in Brussels, Belgium for the event on Feb. 24th:
Multi-Stakeholder Symposium on Improving Patient Access to Rare Disease Therapies.
http://www.rarediseaseday.org/event/europe/687

14. Watch and share this year’s official Rare Disease Day video
https://www.youtube.com/user/rarediseaseday

15. Organize a march for rare diseases in your city and invite all the other rare disease associations
http://www.youtube.com/watch?v=wHb5zzjEo4A

16. Run 28 marathons in 28 days to raise money
http://www.run-to-live.com/28-in-28.html

17. Learn more about this year’s slogan, Join us in making the voice of rare diseases heard.
http://www.eurordis.org/content/rare-disease-day-2016-theme-and-slogan

18. Create a video on living with your rare disease. Include facts and sources and upload it to YouTube

19. Organize a benefit concert with a local band

20. Volunteer with a rare disease organization. Contact them by email today and ask how you can support their mission. You know you’ve been meaning to.

21. Educate yourself about other rare diseases and get in touch with survivors. Just what Heather did. She’s a 10 year survivor of mesothelioma. Read her story.

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