The U.S. Senate just released the Better Care Reconciliation Act (BCRA), their version of the American Health Care Act (AHCA), and it includes several provisions that could be particularly harmful to individuals with rare diseases. Patient advocates across the United States are rallying together to ensure that the BCRA or
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Archive for June, 2017
ULF Research Grant Cycle Now Open
The United Leukodystrophy Foundation is soliciting grant applications to support research in the leukodystrophies. Applications involving any of the leukodystrophies with budgets up to $30,000 (plus up to 10% indirect costs) will be accepted from June 1 through October 2, 2017. The ULF Medical and Scientific Advisory Board will review
Enrolling in a Clinical Trial: The Importance of Making Your Data Public
Now that a few companies are talking about initiating ALD/AMN clinical trials, it is important that the ALD community leverage all the data that will be collected to further improve treatments of the disease. When people with ALD enroll in a clinical trial to determine whether an experimental treatment is