This is the 6th annual observance of Rare Disease Day US. Your participation to date has meant more awareness and hope for rare disease patients across the country. The growth in just a few short years has been remarkable and we believe that we can make the observance even bigger this year! Some of our goals include:
- Gaining more media coverage
- Connecting with more patients, families, caregivers, medical centers, patient organizations and supporters on social media
- Providing more opportunities for patients to share their stories, videos, photos, and blogs with their local media and with the public to help people understand what it is really like to live with a rare disease
- Joining with our global partners to further grow our impact and reach
- Participating in more events across the country and trying to have events in all 50 states
- Encouraging more schools to participate by providing grade-appropriate instruction on rare diseases, related careers, and the challenges of living with a rare disease
- Story-telling through the “Handprints Across America” online photo gallery
- Advocating for rare diseases by encouraging participants to send letters to their elected officials to educate them on the needs of patients and their families
To find more ways to participate, see how you can take action today!
Theme of the Day
Many people with rare diseases can say that access to care involves not just one person, but a team. This year on Rare Disease Day 2014, we celebrate all who come together to support the rare disease community. From the doctors at a center of excellence, to the home health nurses who provide care on a daily basis, this year is about the unsung heroes who commit themselves to a community that might otherwise not get the attention it deserves.
As we celebrate, we also recognize the exciting advancements in medical research and policy developments that are expanding hope in the rare disease community.
Every patient story is different and so is every need. Some patients have less extensive diseases while for others, managing their care is a full-time job. We as a community work toward the goal that no patient should go without, no matter how rare or involved their condition may be. For every patient advocate taking a stand, every parent looking tirelessly for a doctor, every case manager fighting an insurance battle, this day is for you.
That is why this year’s international theme is, Join together for better care!
Visit the Rare Disease Day website to learn more.