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ASCGT NIH Gene Therapy Symposium  September 26-27, 2011.  Bethesda, MD

Wiskott-Aldrich Syndrome

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Mission:  The Wiskott-Aldrich Foundation is a non profit organization dedicated to fund research to find improved cures, provide up-to-date information and support for families living with Wiskott-Aldrich Syndrome around the world.

Goals:
  • To fund research for improved cure and therapies for WAS.
  • Work with leading WAS scientists to identify and fund promising research
  • To become well informed of the current issues facing WAS families
  • Provide financial support to families for the treatment of WAS
  • To collaborate with leading organizations to provide education and to raise awareness among families and the medical community
Wiskott-Aldrich Syndrome is a rare primary immune deficiency disease affecting 4 per million live male births. Patients with WAS are prone to significant bleeding due to low platelets and are at an increased risk of serious infections because they are immunodeficient.  Most have mild to severe eczema.  Patients are at a higher risk of developing autoimmune disorders and malignancies such as lymphoma.  The only proven cure is a bone marrow transplant and most children do not survive past their teen years without a transplant.  Gene therapy as a potential cure has recently come on the horizon as an experimental therapy.  This is a challenging disease to deal with and early diagnosis is crucial for optimal therapy.

As with any rare disorder we face continuing issues of delayed diagnosis, lack of easily accessible information and lack of funds for research for newer therapies and less toxic cures. Our hope is that the Wiskott-Aldrich Foundation will bring together families, physicians and researchers so that we can make the changes necessary for early diagnosis, consensus on treatment and speed up the research necessary for a better cure.  To get involved, please visit:





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Enabling Research, Education & Support for Wiskott Families Worldwide

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