This is the fourth annual observance of Rare Disease Day US. The growth in just a few short years has been remarkable, but we look to everyone to continue that momentum to make this year’s celebration the most successful yet. Throughout this website, you will find many ways you can get involved. Big picture goals this year include:
- Extensive media coverage
- Social networking blitz
- Creating a Rare Disease Physician Database
- Encouraging patients to share their stories, videos, photos, and blogs including to their local media and through social media
- Joining hands with others worldwide
- A three day advocacy and awareness event in Washington, DC at the FDA, NIH and on the Hill
- Support in-school initiatives in high school biology classes and middle and elementary school classes to implement grade appropriate lesson plans for rare diseases
- Create tool kits that can help individuals and organizations plan and implement events and awareness activities focused on rare disease day
- Establishing online photo galleries for the “Handprints Across America” and “Visions of Solidarity” initiatives for patients to express their view of international solidarity in the rare disease community and show the support across the country for this day
- Update a portal for a user-friendly system to send letters to Congressional Representatives so patients can teach their legislators “Rare Diseases 101”
Theme of the Day
Every year, Rare Disease Day has a specific theme worldwide. The theme of Rare Disease Day 2012 is solidarity and the official slogan is “Rare but Strong Together”. The message conveyed is that people active in the field of rare diseases are not alone and by working together we will all benefit. Although people with rare disorders face different medical obstacles, rare disease patients all over the world face the same type of medical, social and economic challenges related to their disorders. Together, in solidarity, the international rare disease community can build a better world for rare disease patients. Visit the Rare Disease Day website to learn more.