As originally reported in Edinburgh Evening News; Assed Ramae felt the depths of familial love when he received his younger sisters kidney, saving him from the decline from his stage…
859 words vs 970 words 8% An article recently published in Science Daily quotes the results of a study showing a favorable outcome for six out of nine x-linked chronic…
Patients with congenital diseases often experience a range of uncomfortable symptoms. On one side of the world, a family with erythromelalgia, a painful condition which can cause redness and swelling…
By Rachel Whetstone from In The Cloud Copy New research is exploring the relationship between circadian rhythms in the brain and bacterial fragments. It’s possible that bacteria has an influence…
By Natalie Homan from In The Cloud Copy Spina bifida is a condition that appears when a developing baby’s neural tube doesn’t close completely. The most severe form of spina…
Hi everyone, These past few weeks have been a lot- for everyone. People in the rare disease community may be struggling with aspects particular to their disease state, like how…
It's easy to feel helpless right now. You're told to stay home and just wait it out. So you're stuck feeling isolated and angsty, knowing there's nothing you can personally…
Chronic granulomatous disease (CGD) is a rare form of immunodeficiency. The most common form of this disease is X-linked chronic granulomatous disease (X-CGD) which is caused by a mutated CYBB gene. This…
As originally reported in Discover Magazine, Huda Zoghbi took an unexpected route to winning the Breakthrough Prize in Life Sciences in 2017 for her discoveries of the genes responsible for…
The Fighting HARD Foundation Rare diseases are difficult to face for a myriad of reasons. They can be financially burdensome, physically painful, and emotionally draining. Further, they can make patients…
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