Changing How Potential ALS Drugs Get to ALS Patients

There is a new ALS non-profit in town, the ALS Emergency Treatment Fund (ALSETF), which is led by managing director, Jess Rabourn, and research director and PALS, Eric Valor. ALSETF’s goal is to provide post-Phase II ALS therapies to ALS patients who might not qualify for clinical trials. Over 50% of people with ALS are not eligible to participate in clinical trials because their disease has progressed past the minimum inclusion criteria for the trial. ALSETF’s goal is to help these ALS patients gain access to therapies that are in the later stages of the clinical trial process by partnering with the government and industry under the Expanded Access Program (EAP). EAP allows people with life threatening conditions who have no other treatment opinions to be administered a therapy that has not yet been approved by the FDA. Rabourn said “We want to find ways of facilitating near-term access for patients. For a helluva lot of patients, there just is no access.”

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