Building awareness and communities to support and find treatments for Rare Diseases and Genetic Conditions
Global Genes | RARE Project speaks with one voice for thousands of rare diseases that are increasingly being identified with next-generation sequencing. In the United States, rare diseases and disorders are defined by the U.S. Food and Drug Administration (FDA) as those that affect fewer [...]
After seven years of unexplained symptoms and searching for answers, I was diagnosed with Mast Cell Disease and Postural Orthostatic Tachycardia Syndrome (POTS) in April of 2012. My form of Mast Cell Disease is called Mast Cell Activation Syndrome. It causes me to have severe [...]
by Jill Clegg My name is Jill. I am the proud mother of four great boys, two of whom have a rare genetic disorder. My husband and I have been searching for 11 years for a reason for our oldest son, Tyler’s, disability. We have [...]
by Kimberly Radomski In 1978 before multiple sclerosis, I was a normal active lady, who would go to beautiful lakes and warm sandy beaches with family and friends. I loved the outdoors, and I loved the feel of the warm sun upon my face and [...]
It is not easy to paint a picture of Batten disease for people who have never seen it before. If you wish to paint with a large brush, you can tell them that children born with Batten disease never survive it; that it is total [...]
A profound and deeply moving video has been making the rounds online as the inspiration behind it passes away from Osteosarcoma earlier this month. The teen, Zach Sobiech, worked with a documentary crew, family and friends to show his last joyous moments celebrating life in [...]
Uplifting Athletes has released a new infographic on rare disease. Uplifting Athletes is a national nonprofit organization aligning college football with rare diseases and raising them as a national priority through outreach, research, education and advocacy. What makes Uplifting Athletes unique is that its chapter network is run [...]
