Sweatt Lab At UAB Recieves $1.8 Million Grant to Study Pitt Hopkins


Organization: Pitt Hopkins Research Foundation July 7, 2014 — Dr. J. David Sweatt, Professor and Chairman of the Department of Neurobiology at the University of Alabama at Birmingham, has received a research grant from the US National Institute of Mental Health (NIMH) to fund a […]

The Gift of Global Genes: Provide Hope to Families of Rare Disease This Holiday


New parents dream about watching their babies walk for the first time and saying their first word. They dream about clapping in the crowd as their children graduate high school, get accepted to college and find a job that fulfills them. They want their children […]

Tips for Coping with Rare Disease


Though there are over 7,000 rare diseases, there is one thing that all rare disease patients and families have in common- the need to cope with whatever challenges their disease throws their way. This is something that I have seen in my own life and […]

Rare Disease White Paper Open for Public Comment


By EveryLife Foundation for Rare Diseases NOVATO, CALIF., JUNE 25, 2013 — /PRNewswire-USNewswire/ — The EveryLife Foundation for Rare Diseases assembled a working group drawn from industry and patient organizations to develop a white paper to address the critical scientific issues that would govern a successful […]

“The Promise In Unraveling The Mysteries Of Rare Diseases” on NPR


Take a listen as NPR delves into the world of rare disease with this story. NEAL CONAN, HOST: This is TALK OF THE NATION. I’m Neal Conan in Washington. When Jeannie Peeper was born, she had 10 fingers, 10 toes, everything her parents expected, except […]

Advancing Patient-Focused Drug Development and Benefit-Risk Assessment Webinar


Thursday, May 30, 2013 (11:00 a.m. – 1:00 p.m.) PhRMA Boardroom 950 F Street, Suite 300, Washington, D.C. Dial In: 1-800-875-3456   Verbal Passcode:  VC20743 “Advancing Patient-Focused Drug Development and Benefit-Risk Assessment” We are pleased to announce the first in a series of informational briefings for stakeholders […]

Twins’ Rare, Unnamed Illness Causes Blood Vessels to Shred

Twins, Forest and Daniel, will hold a fundraiser to help pay for their medical bills.

Twin brothers Forrest and Daniel Thiess had always wanted to serve in the U.S. military, but because of a rare illness, they can’t, WKRC reported. Both men, who live in Mason, Ohio, enlisted at the age of 17 – Forrest as a Marine, Daniel as […]