RDAN is committed to raising public awareness of the 6,000+ rare diseases that affect nearly 30 million Americans. Show your support and help grow the conversation by sporting a zebra-striped ribbon. TOGETHER WE CAN spread the word!
Knowledge is essential to understanding. RDAN strives to keep information about rare diseases and related resources current and easily accessible. Use this site to teach people about how they can help. TOGETHER WE CAN educate the public!
The words of a single patient may go unnoticed, but many patients united are harder to ignore. RDAN advocates for rare disease patients’ access to health insurance and medical care. TOGETHER WE CAN ensure the treatment patients need!
- Rare Disease Awareness Network held our 1st Health and Wellness Fair on Saturday, February 22, 2014. Over 25 different vendors participated in the event and there was a little something for every interest and every age group. Chiropractors offered free screenings and information. Dr. Polochick engag[...]
- There are about 30 million Americans living with a rare disease diagnosis. That works out to be about 1 in every 10 people. That is an awful lot of people yet so many haven't heard of the rare disease cause or think that they do not know anyone diagnosed with one. However, given the statistics, you[...]
- Each month, the medical community strives to bring attention to the many health issues that continue to plague our world. Different action groups have ensured that awareness is brought to their cause for an entire month, or a week, or a day. The special day for Rare Disease Awareness is always held [...]
- The RDAN community will join others around the world in observing Rare Disease Day on February 28, 2014. On this day, millions of patients and their families will share their stori[...]
Barth Syndrome (BTHS)
- In April 2008, Christopher Pena Jr. was born with non-compacted cardiomyopathy. Non-compacted cardiomyopathy is a very rare condition in which the heart muscle remains sponge-like [...]
About Rare Diseases
Living with a rare disease can feel like a burden you can’t possibly share. Even the challenges that are part of everyday life can seem overwhelming.
You’re not alone.
While some diseases impact millions of people, only those affecting fewer than 200,000 people are considered rare. The United States Genetic and Rare Diseases Information Center reports that there are more than 6,000 rare diseases on record. In 2014, approximately 30 million Americans are living with a rare disease; that’s nearly one in ten people.
Patients and families coping with rare diseases often face additional challenges related to the uncommon nature of their ailments, but RDAN is dedicated to helping every step of the way. Learn more about our mission here.
So many questions…
Want to learn more about some of the rare diseases that affect RDAN community members? Check out the Factsheets.
Unsure of your next steps? Read our Frequently Asked Questions.