Study Reveals Slow Progression of X-Linked Adrenoleukodystrophy in Women
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
United Leukodystrophy Foundation
United Leukodystrophy Foundation
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.
Condition Awareness & Advocacy
Here is a list of conditions this partner raises awareness and advocacy for:
Patient Worthy Posts on Leukodystrophy
‘Mountain Man’ Maintains Work Out Regimen with ALD: A Wall Street Journal Profile
Whose ready for some Monday motivation to get your week started? Readers of the Wall Street Journal might be familiar with their “What’s Your Workout?”
Alexander Matthew’s ALD Story and Legacy: Part 2
This is Part 2 of Alexander’s Story, click here to read Part 1. During Alex’s journey Jhoanny had gotten some information from NORD’s website and
Alexander Matthew’s ALD Story and Legacy: Part 1
Jhoanny’s son Alexander Matthew was born perfectly healthy in 2008. When Alexander was three, Jhoanny noticed he seemed to be drinking a lot of water
Working to Improve Gene Therapy for Adrenoleukodystrophy and Other Rare Conditions
Rare disease research is often underrepresented in the field of science. However, recent developments have made researchers more interested in studying this group of diseases.
The First US Patients Have Been Dosed in a Study of a Drug For AMN
The first US patient has been dosed with the drug MIN-102 as part of a clinical trial into its effects in patients with adrenomyeloneuropathy. For
