WHAT IS RARE DISEASE DAY?
Rare Disease Day is observed internationally on the last day of February to raise awareness about rare diseases and their impact on patients, families, and communities. The day is a global call to action, promoting equity in social opportunity, healthcare, and access to diagnosis and therapies.
Why it matters?
Rare Disease Day is more than an observance—it’s a movement. It highlights the urgent need for research, tailored treatments, inclusive healthcare policies, and stronger community support. By coming together, we amplify the voices of those often unheard and advocate for meaningful change.
WAYS TO GET INVOLVED
Whether you’re new to the rare disease space or a seasoned advocate, your voice matters. Here are some meaningful ways to engage:
- Spread Awareness: Use social media to share facts, stories, and resources. Tag your posts with #EveryoneIsWe and #RareDiseaseDay to join the conversation.
- Wear Zebra Stripes: The zebra is the symbol for rare disease awareness. Wear zebra-themed clothing or accessories and share your photos to spark dialogue.
- Educate Your Circle: Talk to friends, family, and colleagues about rare diseases. Host a lunch-and-learn, distribute educational materials, or invite a speaker to your school, workplace, or church.
- Advocate for Policy Change: Contact your local, state, and federal representatives to support legislation that improves research funding, healthcare equity, and support services for rare disease communities.
- Donate or Fundraise: Support organizations like the E.WE Foundation who provides direct assistance to families and drives initiatives in research, policy, and education.
- Share Your Story: Personal stories are powerful tools for education and advocacy. If you or a loved one is impacted by a rare disease, consider sharing your experience in writing, video, or a podcast appearance.
- Volunteer Your Time: Lend your skills to local or national rare disease initiatives. Opportunities range from administrative help to event planning, graphic design, mentorship, and more.
RARE DISEASE WEEK ON CAPITOL HILL
Each year, Rare Disease Week on Capitol Hill unites advocates from across the U.S. to speak directly to legislators about the challenges facing rare disease families. The E.WE Foundation proudly partners with the EveryLife Foundation to support this impactful event. Learn more at rareadvocates.org/rdw.
Community Spotlight: Rare Disease Day at the White House
We were honored to have our CEO & President, Sarita Edwards, invited to the White House’s Rare Disease Day forum, hosted by the Office of Science and Technology Policy. The event underscored the federal government’s ongoing commitment to advancing solutions for the nearly 10,000 rare diseases that affect millions of Americans. Follow our updates for future opportunities to join national advocacy efforts.
TUNE IN: BEING RARE PODCAST
Rare Disease Day. www.rarediseaseday.org | National Organization for Rare Diseases. www.rarediseaseday.us
The E.WE Foundation 