Ciara's NORD 7,000 Mile Rare Movement: Rise Up for Rarity

There are 7,000 rare diseases & disorders that combined affect 30 million Americans–THAT IS 1 in 10 of us. Statistically is is almost impossible for you not to know someone with a rare disease. Not only are these individuals dealing with their specific medical problems but people with rare diseases struggle to get a proper diagnosis, find information, and get treatment. It didn’t hit home for me until my best friend was hospitalized and I had never even heard of the diseases that she was diagnosed with before, virtually no one had. As if It wasn’t scary and hard enough that she was dealing with the health issues of rare diseases, she also had to endure the added difficulty due to the lack of awareness of her diseases in the general and medical community. Its hard to feel like there is no way to help someone you love or those in need but Raising awareness is where EVERYONE can greatly HELP people afflicted by rare disease.

SO, I am overly excited to announce that this February, I am joining NORD’s Rare Movement Campaign to raise awareness for rare diseases. Together, participants aim to move a total of 7,000 miles of donor-supported movement by Rare Disease Day on February 28th. There are 7,000 known rare diseases, 95% of them have no treatment. Help NORD continue to support the 30 million Americans affected by rare diseases through patient assistance and support programs, research grants, advocacy and educational initiatives.