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Rare Disease Research

My Children Have a Rare Disease and I Need to Take Action!

Alexis Buryk | Posted 06.02.2016 | Impact
Alexis Buryk

It really has been only six months since I found out that my 26-year-old fraternal twin daughters, Katie and Allie, have Late Onset Tay-Sachs (LOTS). ...

Celebrating World Lupus Day: Gaining Ground With Effective Policy

Chester Aldridge | Posted 07.10.2014 | Impact
Chester Aldridge

Today celebrates a decade-long movement to gain public and private interest to increase financial support, resources and assistance for the chronic, autoimmune disease that affects an estimated 2 million people in the United States alone.

Is It Time We Paid More Attention To Rare Diseases?

TIME | Posted 11.17.2011 | Healthy Living

Treating these diseases puts a burden on health services and living with them can destroy families--losing a loved one is a tragedy, no matter if it's...