By Jodee Redmond from In The Cloud Copy Massachusetts Institute of Technology (MIT) researchers have recently announced they have identified hundreds of genes that are required for neuron survival. The…
Sunday, March 15, 2020 was the sixth International Stiff Person Syndrome (SPS) Awareness Day. The patients who often are forgotten on this day of awareness are the rarest, most severely…
The American Kidney Fund (AKF) has recently announced the formation of a Coronavirus Emergency Fund intended to support low income dialysis and transplant patients who may face unanticipated financial challenges…
People affected by rare diseases often find it difficult to find adequate treatment for their conditions. Due to the rarity of their diseases, there are often no doctors who specialize…
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…
The European Parliament has announced that they will be relaunching their "Network of Parliamentary Advocates for Rare Diseases." Its aim is to create a new policy framework which can improve…
Researchers all over the world are hard at work trying to develop both treatments for Covid-19 and vaccines for the illness. Professors of rheumatology at the University of Alabama, Randy…
There are currently no FDA approved treatments for alopecia areata, a condition that sees the loss of hair all over the body. Eli Lilly and Company, working with Incyte Corporation,…
Social distancing sucks in so many ways. I'll be the first to admit it. You can feel isolated, alone, stuck, scared. But, there are some upsides to this crazy situation.…
According to a story from Healio, chronic kidney disease and diabetes are closely related. Kidney disease is unfortunately a frequent complication of both type 1 and 2 diabetes. In the…
According to a story from gurufocus, the biotechnology company QED Therapeutics recently announced that the first patients have been dosed in separate phase 2 and phase 3 clinical studies testing…
We know that older individuals and those who are immune compromised are more at risk for experiencing severe Covid-19. These include multiple sclerosis (MS) patients. Multiple Sclerosis is a rare…
According to a story from The Scarborough News, brother Connor and sister Kiera Pickering, aged eleven and twelve years respectively, will be some of the first patients to be treated…
Kidney disease is following other disorders as a target for new and improved machine learning. As published in a recent edition of Science Daily, pathologists have often classified kidney diseases…
Rare disease advocates in India are pushing for the Health Ministry to create a new fund for rare diseases. Additionally, they're pushing for medicines and medical equipment used for these…
By Danielle Bradshaw from In The Cloud Copy There are not too many things that a mother won’t do for her child, and Alison Reynolds is the perfect example of…
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