Caring for people living with a rare disease has many facets. Some patients have access to medicines while others have no treatment available. Some patients are fairly independent while others require intensive physical assistance and equipment. Care can consist of special equipment, expert medical consultation, physical therapy, social services, medicines, respite for family members, and much more. For most children and adults living with a rare disease, primary care is provided by family members.
Rare Disease Day 2017 focuses on care and encourages everyone in the rare disease community to Join us in making the voice of rare diseases heard. Rare Disease Day takes place on February 29th this year, but activities are celebrated throughout the month of February.
Here are 21 ways you can be involved this Rare Disease Day:
1. Change your Facebook profile or cover image to the Rare Disease Day logo for the week
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
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. Join EURORDIS in Brussels, Belgium for the event on Feb. 22-23th or watch it Live!
2nd Multi-Stakeholder Symposium on Improving Patient Access to Rare Disease Therapies
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. Run 28 marathons in 28 days to raise money
17. Learn more about this year’s slogan, Join us in making the voice of rare diseases heard.
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
Rare Disease Day 2017 official video
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.