Patients as proactive actors in research
Rare Disease Day 2018 (28 February) focuses on this year’s theme – research. This year’s video pays tribute to the role patients play in research. The patient community needs researchers. They discover diseases and develop treatments and cures. But researchers also need patients and reply upon their participation to ensure research is meaningful. Patients are not only subjects but also proactive actors in research.
There has been great progress in rare disease research, in part thanks to the advocacy work of the rare disease patient community. However, the fact remains that there are over 6000 rare diseases, an estimated 30 million people living with a rare disease in Europe and 300 million worldwide, but no cures and few treatments available for the majority of these diseases. To help change this, patient involvement in research needs to be taken to the next level.
Rare Disease Day 2018 offers participants the opportunity to be part of a global call on policymakers, researchers, companies and healthcare professionals to increasingly and more effectively involve patients in rare disease research.
Here are 21 ways you can be involved this Rare Disease Day:
1. Spread the word about Rare Disease Days between your friends and family
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
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
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
PH Belgium patients raise hands for rare disease day!
10. Participate in the Handprints Across America event
11. Become a friend of Rare Disease Day. Then tell a friend to do the same.
12. Raise and join your hands for rare diseases
13. #ShowYourRare – paint your face and share your selfie during the month of February.
14. Watch and share this year’s official Rare Disease Day video
15. Organize a march for rare diseases in your city and invite all the other rare disease associations
16. Customise your Facebook profile picture with the Rare Disease Day frame!
#ShowYourRare – ow.ly/5jot30hSp3C
17. Learn more about this year’s slogan and theme, Show your rare, show you care.
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.
Have an activity to add to the list? Share it in the comments.
Learn more about RareConnect.org
Bonus activity: Join the Thunderclap
Looking to raise awareness about your rare disease and connect with others around the world? Start a Discussion about your disease on RareConnect and we will promote your post on social media.