Polycystic Kidney Disease
PKD Patient Makes Sure Other Patients Aren’t Fighting Alone
By Danielle Bradshaw from In The Cloud Copy Bill Bradford has made helping others a lifelong habit, but now this veteran and former paramedic needs
Rare Patient News. Well Done.
Review of Rare Movement Disorders in India and the United States
- March 30, 2020
New Phenylketonuria Treatment Granted Orphan Drug Designation
Experimental Treatment for Cryopyrin-Associated Periodic Syndrome (CAPS) Shows Potential in Early Trial
Immunocompromised During COVID-19? Not Much Has Changed in the Lives of Many Rare Patients
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Huntington's disease
Neuroscientists Use Genetic Screen to Identify Huntington’s Disease Drug Targets
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
Rare Disease
The Rarest Patients on This Sixth International SPS Awareness Day
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
Chronic Kidney Disease
In Response to COVID-19, the American Kidney Fund Launches Emergency Fund for Low Income Patients
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
Tuberous Sclerosis
UCLA Offers Virtual Care for Conditions like Tuberous Sclerosis
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
Kidney Stones
“I Would Do it Again in a Heartbeat”, This Sister Donated Her Kidney, Gifting Her Brother His Health
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
