Hope

A rare word, in the rare community

95% of all rare diseases do not have a single FDA approved drug treatment.

Because of the cost and lack of awareness many rare diseases are known as orphaned diseases. This means those who are directly affected by the disease are on their own in spreading awareness, and raising funds for research. The average cost of gene therapy research for a single rare disease is over

Now you might think this is a lot of money, but when put into perspective of how our society views value of time and life, it may change your mind.

Here are some stats:

We spend our money where we care, so the question is

Do You Care, for the Rare?