Finding the money to fund research and the development of treatment (and maybe even a cure) for most rare diseases is difficult for a couple reasons.
- Rare diseases are notoriously hard to diagnose
- There are a lot of them
It’s thought that there are over 7,000 rare diseases affecting more than 300 million people globally.
Genomic sequencing, however, is leveling the playing field, and the avenues of fundraising are getting savvier.
For example, a little girl named Maya has become the first person to have her DNA sequenced, which allowed doctors to discover what was behind her developmental delays.
Where did the money come from? Crowdfunding!
You’ve probably seen or heard of GoFundMe.com. Maya’s parents actually took advantage of this relatively new way to fundraise, and thank Goodness!
For a list of the top 10 crowdfunding sites, click here.
The Amyloidosis Foundation is going with a tried and true method. They are selling t-shirts to benefit their organization. Amyloidosis is one of the many rare diseases that has actually been diagnosed, and while there is no cure, treatment makes it possible for patients to control their symptoms.
