Today is Rare Disease Day. This day is observed on the last day of February each year. The first Rare Disease Day was held in 2008 and launched by EURORDIS: Rare Diseases Europe and its Council of National Alliances.
Across the globe, the rare disease community and its supporters are coming together today to share their colors and call for more equitable access to social opportunity, treatment and care for people living with rare diseases and their families.
The hope of Rare Disease Day is to promote awareness and education for the 300 million people living with rare diseases worldwide. According to rarediseaseday.org, a disease is considered rare when it affects fewer than 1 in 2,000 people.
NORD, or the National Organization for Rare Disorders, is the official sponsor for Rare Disease Day in the United States.
Those with rare diseases face universal challenges and hardships. This may include financial difficulties, misdiagnosis and inaccessible treatment options. Despite the trials that rare diseases impose on people’s lives, there are ways to show support for those living with these conditions. There are ways to make a difference, whether you are someone with a rare disease, a friend of someone struggling to get an accurate diagnosis, or a physician trying to expand their knowledge.
This article will highlight 3 ways that you can show your support for those with rare diseases. Not only can you show your support today, but every day.
1. Get Involved on Social Media
Showing your support on social media is an easy way to make an impact. Stand in solidarity with people living with rare diseases by sharing a photo with your hands painted on social media. You can also paint your face with bright colors and post a selfie. Challenge yourself and see if you can get a group photo! The theme of Rare Disease Day this year is: Share Your Colours. When posting your photo, use the hashtag #RareDiseaseDay and tag @rarediseaseday.
Don’t feel like painting your hands? You can easily share this post as a way to contribute to spreading awareness. Additionally, you can share the graphics in the gallery as a way to promote Rare Disease Day.
Any conversation about rare disease day helps plant the seed of awareness. Conversations spark ideas and that knowledge can go a long way!
2. Advocate
You don’t have to have a rare disease to advocate for those with rare diseases. Advocacy is needed to make substantial changes for those who are living with conditions or diseases that are rare. This Rare Disease Day, advocate to policy-makers about the reality of rare diseases. Help patients fight for access to healthcare including a diagnosis, treatment, and care.
Unsure about who to contact? If you live in Racine and Kenosha County, contact Representative Bryan Steil. Email him by visiting his website.
Steil’s Racine office hours are Mondays from 9 a.m. until noon and Wednesdays from 1 p.m. until 4 p.m. Office hours in Kenosha are Tuesdays from 9 a.m. until noon and Thursdays from 1 p.m. to 4 p.m.
Not sure what to say? Share the following facts and visit Rare Disease Day’s Equity toolkit as resources.
- There are 300 million people living with a rare disease
worldwide - There are over 6000 different rare diseases
- 72% of rare diseases are genetic
- 70% of those genetic rare diseases start during
childhood
3. Listen to Patient Stories
5 patients living with Rare Diseases around the world have been named the 2022 Rare Disease Day Superheroes. The Rare Disease Day Organization says, “although they live with different diseases, come from different countries, and face different barriers, our heroes have lots in common: a shared passion for life, shared challenges and frustrations, and a shared drive for change.”
Read about their real-life stories and watch an international video that was made. Read their stories to find inspiration, hope, strength and courage.
If you are someone living with a rare disease, share your story today.
Local News
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