Building awareness and communities to support and find treatments for Rare Diseases and Genetic Conditions
The National Institutes of Health (NIH) will celebrate the sixth annual Rare Disease Day with a two-day-long celebration and recognition of the various rare diseases research activities supported by the Office of Rare Diseases Research – National Center for Advancing Translational Sciences (NCATS), the NIH [...]
Mirah Henry stood in front of her fellow students and slowly explained how she learned she had a rare disease. She was a bit shy at first, but she had an easy audience. Her 20 or so classmates stared back, captivated. They had all seen [...]
World Rare Disease Day was in full swing at La Costa Canyon High School in Carlsbad, as seen in the pictures below! Alexis Beery and her twin brother, Noah Beery, were diagnosed with a mutation in their SPR gene, one of the rarest forms of [...]
In honor of today’s Rare Disease Day, PatientCrossroads has issued an invitation to rare disease organizations, including patient advocacy groups, pharmaceutical companies and medical researchers, to become Registry Partners in a new shared, open patient registry. There is no charge to become a Registry Partner, [...]
In recognition of Rare Disease Day, Assay Depot and Rare Genomics Institute (RGI) announced today the winners of the first ever Rare Disease Science Challenge: BeHEARD (Helping Empower and Accelerate Research Discoveries). In total, more than $500,000 worth of research services will be awarded to [...]
Reposted from The Catalyst. Written by Stephanie Fischer. While 400 therapies for rare diseases are worth celebrating, there is a lot more to learn about rare diseases in order to better diagnose and treat them. Many are inherited and caused by gene mutations, and new rare [...]
Having trouble visualizing the impact of rare and genetic diseases? In honor of World Rare Disease Day, Siren Interactive has created a simple infographic to make the stats on rare a little easier to understand. Click the image below to learn more.
