BioDigest: Biotechnology and Rare Diseases

Every day, organizations like the National Organization for Rare Disorders (NORD) work with patients and families to connect them with the resources they need to manage rare diseases and disorders. These resources range from support group recommendations to contacts at companies creating therapies for rare and orphan diseases and disorders. In this video, we meet [...]

Rare disease sufferers meet for first time

TWO sufferers of one of the world’s rarest diseases – Pollitt Syndrome – meet for the first time in Birmingham, despite being born thousands of miles apart.

Rare Diseases – NJN News Healthwatch Report

Despite the list of 7000 rare diseases by the National Institutes of Health, a North Jersey girl has a disease so rare that it defies labels. For more news and events in and around New Jersey, visit NJN’s website at www.njn.net

Rare disease – causing patients to turn to stone

fopworld.blogspot.com Its the story of patients who have disease causing their soft tissue – muscle, ligaments, tendons – to turn to literal stone. It’s like their skeleton is forming a skeleton, which will eventually immobilize them.

Teenager Who Can’t Stay Awake – Rare Sleep Disorder

Fox News Channel 10 (Phoenix) story about teenager Brendan, 19, who sleeps 12-16 hours at a time, and is asleep more than he’s awake. Doctors struggle to figure out why. Sleep doctor Michael Breus comments on how sleep disorders are on the rise, and says there are between 85-88 identified sleep disorders at the time [...]

Rare sleep disorder

Marc veal