Students for Rare

While the journey of each individual and family affected by a rare disease is unique, the 30 million (1 in 10) Americans, and millions more around the world with rare diseases, share common goals, challenges and life experiences.

• More than 90% of these 7,000 disorders have no FDA approved treatment. So, there are few treatments much less cures for these chronic (ongoing/lifelong), often life-threatening health issues that worsen over time.

• There is very little research and information on all rare diseases. We can't treat or cure what we do not understand. It's like navigating an unexplored world with no map. The great thing is, rare disease research can play a leading role in innovation and the advancement of medical and pharmaceutical science for more common health issues, too.

• While recent innovation in these "orphan drugs" provide hope, that need is now shadowed by a growing problem of affordability. Does it do us any good to have treatments few, if any can afford?

• Speaking of access, patients have to know what they have to even have the opportunity to be treated if something is available for them. Would you believe it takes people 5 to 7 years to get a correct diagnosis? Many people don't have the resources to spend that kind of time with often three or more doctors to make that happen.

One of the most important things that YOU CAN DO to help people with rare diseases is to advocate and raise awareness. This club is the perfect way to make a difference!

If 1 in 10 Americans has a rare disease, it is is likely that 118 Niwot students struggle with a rare disease - or have something that they don't have a name for because they are on that 5 to 7 year diagnostic journey still. This is not some far away problem - it hits close to home. You probably already know someone, or maybe it's you.

This is a place for all of us to share our stories -
and find a place to connect, support, and make a difference.