Located in DeKalb, Illinois, the United Leukodystrophy Foundation (ULF), is a nonprofit, voluntary health organization dedicated to providing patients and their families with information about their disease and assistance in identifying sources of medical care, social services, and genetic counseling; establishing a communication network among families; increasing public awareness and acting as an information source for health care providers; and promoting and supporting research into causes, treatments, and prevention of the leukodystrophies. Leukodystrophies comprise a group of genetic nervous system disorders affecting the myelin sheath, which insulates the axon through which nerve impulses are conducted. Incorporated in 1982, the United Leukodystrophy Foundation is solely supported and funded by donations.
Here is a list of conditions this partner raises awareness and advocacy for:
According to a story from pmlive.com, the gene therapy company Bluebird Bio’s latest recently released results from the company’s phase 2/3 clinical trial demonstrates further
According to a story from PharmaTimes, the gene therapy company Bluebird bio has released updated results from a clinical study of its Lenti-D gene therapy
In May 2016, I was diagnosed with a rare genetic neurological disease called adrenoleukodystrophy (ALD). Sadly, it’s incurable and there’s no medication to ease my
According to a story from Ysios Capital, the biotechnology company Minoryx Therapeutics recently announced that the first patient has been dosed in the company’s phase
Friedreich’s Ataxia Friedreich’s ataxia (FRDA) is a rare disease which is caused by a frataxin deficiency. This deficiency results in the degeneration of nerves within
According to a study published in the Orphanet Journal of Rare Diseases, a study that was intended to identify a new approach to monitoring the progression
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