Today, the National Center for Study of Orphan Diseases (CSOD) reported that the center is in the process of organizing a meeting in May 2003 in Washington DC to review the available evidence and to discuss the feasibility of conducting clinical trials of Thrombopoietin (TPO) in Amyotrophic Lateral Sclerosis (ALS) following a report of the use of TPO in a patient with advanced ALS.

"The purpose of the meeting, which will be held at NIH, is to bring together representatives from Genentech, Pfizer, Harvard Medical School (Massachusetts General Hospital, Harvard Center for Regeneration and Repair), ALS Association, and National Institutes of Health (NIH), and CSOD to discuss the relevant issues" Dr. Shadi Farhangrazi, the Executive Director of CSOD said.

"There are obviously many scientific and medical factors that need to be considered before deciding whether there is adequate justification for conducting a clinical trial, and that is why we are setting up a meeting at NIH." Farhangrazi said today. "This is of major significance, and we have worked very hard over the last three weeks to bring the interested parties together".

On April 2nd, in a press release, a company called Neuroregeneron referencing a presentation at the annual meeting of the American Spinal Injury Association suggested that a cocktail of TPO and thyroid hormone could arrest or reverse ALS.

CSOD is a non-profit organization founded and funded by ALS HOPE, Chris Hobler/James Maritz Foundation in St. Louis, MO in the fall 2002. Both ALSA and ALS HOPE are members of ALS national Consortium. CSOD is a "bridge" organization, creating alliances, collaborations and common projects in order to expedite research towards finding cures for many orphan or rare diseases. CSOD will work with academic institutions, biotechnology and pharmaceutical companies and National Institutes of Health.

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