Join Us for Rare Disease Month
Traditionally, the last day of February is Rare Disease Day, but with over 7000 types of rare diseases affecting over 30 million Americans, we are dedicating the whole month to rare diseases.
One of our missions is to find treatments and cures for rare diseases. Rare diseases receive little research funding, and patients spend roughly around 7 years and go through 8 physicians just to receive the correct diagnosis. Around 95% of rare diseases have no treatments, and 75% of those affected by rare diseases are children.
This February, let’s do more to help find cures for rare diseases.
What You Can Do To Help!
Join Our Rare Genetic Disease Program
If you have a rare genetic disease, join our Rare Genetic Disease Program. If you don’t have a rare disease, inform everyone you know with a rare disease to join. Research advances and clinical trials are not possible without adequate patient participation and therefore it is critical to recruit as many patients as possible. The Institute's program consists of a stem cell biobank made up of blood samples from patients. We take the stem cells from the blood that contain the genetic defect in the cells and use them for drug testing.
If a drug successfully cures the disease in your cells and enters a clinical trial, we will notify you. That said, we CANNOT guarantee that we will find a cure for your disease.
Interested in signing up? Please do the following:
-Sign up on our Patient Registry by clicking here.
-Fill out the Consent to Release form, which you can find here.
If you’re a physician and interested in helping us, please sign up on our Physician Registry by clicking here.
Participation is voluntary. There is no charge to participate. Your medical records WILL be confidential and will NOT go out to any outside third parties.
Help Us Raise Funds for Cures
Whether you send in a donation or ask your family and friends to contribute or host your own fundraiser, every cent counts.
Spread Awareness about Rare Diseases and Our Program
With 30 million Americans affected by rare diseases, you most likely know someone with a rare disease. Spread the word about Rare Disease Month to all your friends and family. The more people know about rare diseases, the more we can do to find treatments and cures.