Disease awareness is all the rage right now, and that's great and all because it brings awareness (and funding) to potentially devastating conditions. But there are still hundreds — thousands even — of rare diseases that you've probably never heard of but are equally as deserving of your time, attention, and donations. Though the name might imply that the afflicted are part of a small community, there are an estimated 30 million Americans suffering from a rare disease.
Not only are those living with a rare disease often isolated from their friends and family because of their condition, but they're also often misdiagnosed or dismissed by doctors who don't understand their symptoms. Only five percent of rare diseases — and there are more than 7,000 of them — have an approved treatment, according to the Pharmaceutical Research and Manufacturers of America. Having a rare disease is often a very alienating experience — but it doesn't have to be.
Every February 28, millions of people recognize Rare Disease Day in an effort to bring awareness to the plight of millions and to raise money for research. On the other 364 days of the year, you can listen to and connect with people who are affected by these disorders. If you or someone you love suffers from a rare disease, join a support group, outreach network, or advocacy group to increase the visibility of and attention focused on these rare diseases. And most importantly, donate to organizations that are working towards a cure.
In 2015, a banner year for the fight against rare diseases, 47 percent of new drug approvals were for medications used to treat rare diseases. There were 11 new cancer therapies, eight innovative first-in-class treatments, and five new medicines for pediatric patients. We have so much further to go in the fight to eradicate these conditions, but there's no reason we can't make 2018 the best year yet!
Want to help but not sure where to start? Keep scrolling to learn more a few rare diseases that could be cured with your assistance.