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 Everylife Foundation

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PostSubject: Everylife Foundation    Thu Dec 22, 2011 6:51 pm

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The EveryLife Foundation for Rare Diseases was formed in early 2009. The initial goals of the Foundation were presented at the May 2009 Partners in Progress Summit, hosted by the National Organization for Rare Disorders (NORD) in Washington, DC. The Foundation is built around the personal vision of Dr. Emil Kakkis, M.D., Ph.D., who has spent over 18 years researching and delivering new treatments for patients suffering from rare diseases, both in academia, and as Chief Medical Officer of BioMarin Pharmaceutical. Dr. Kakkis' hope is to expand access to treatment for patients with very rare diseases by improving the regulatory process through better understanding of new surrogate measures of disease, new clinical study designs, and new organizational focus at the FDA.
The Foundation has initiated the CureTheProcess campaign to focus on increasing the predictability of the regulatory process for treatments for rare diseases. The goal is to change the way rare disease treatments are developed and regulated, to transform the drug development process to meet the needs of more patients with very rare diseases. The Foundation will accomplish this by organizing scientists, doctors, parents, patient advocacy organizations and government, to assemble insightful examples and scientific data to help create new science-driven public policy that will improve the regulatory process for rare disorders.
By creating a clear pathway for orphan treatments, development timelines will shorten and reduce the financial risk associated with development of rare disease therapeutics. The result should be a surge in development activity for even the most rare disorders giving more patients with rare biochemical and genetic disorders earlier access to effective treatments. Additionally, increased investment in early stage biotech companies focused on rare diseases will have a positive impact in local communities and biotechnology jobs that are currently at risk.Taken from the Everylife Foundation
Visit their website to find out how you can help them. Everylife Foundation
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