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Advocacy Initiatives

Kakkis Every Life Foundation's CureTheProcess Campaign

In July the Wilson Disease Association signed on to endorse the Kakkis Every Life Foundation's CureTheProcess campaign for rare disease treatment development. The campaign strives to inspire science-driven public policy to increase the predictability of the regulatory process for rare disease treatments. The WDA supports Kakkis Foundation's goal of giving even the most rare diseases access to the accelerated approval process and fulfill more completely the original intentions of the Orphan Drug Act.

Their goals are to:

  • Establish a new Office of Drug Evaluation for Genetic and Biochemical Diseases, consolidating expertise to ensure safe, effective and timely patient access to needed treatment.
  • Create a new standard for the surrogate and biomarker endpoints used for rare disorders, to allow treatments for these diseases to have full access to the accelerated approval pathway.
  • Devise new clinical study design paradigms for rare diseases that properly account for clinical heterogeneity and disease complexity to properly capture treatment effects.

For more information please visit http://www.curetheprocess.org/ to learn more about how you can take action to support this important initiative.

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Jean P. Perog
Jean P. Perog President
Jean is a retired CPA living in Merritt, British Columbia. She has WD and has a brother with WD. Jean also served as Treasurer of the Wilson Disease Association and is an active volunteer in her community.
Carol Terry
Carol Terry Vice President
Carol was diagnosed in 1973 with WD and is a retired US Government accountant. She helped found the WDA in 1983 and served as its President for ten years. She also served as Vice-President, Treasurer and Secretary.
Mary L. Graper
Mary L. Graper VP Scientific Affairs
Mary has over 25 years experience as a volunteer leader, and is recognized for her creativity, organizational and leadership skills. She holds a B.S. degree in Education from the University of Wisconsin-Milwaukee.
Jeanne A. Friedman
Jeanne A. Friedman Secretary
Jeanne is a Licensed Clinical Social Worker and has WD. She has been with Wilson Disease Association since 2013 and lives in Kew Gardens, New York.
Stephen Walsh
Stephen Walsh Treasurer
Stephen lives in Boulder, Colorado and has a daughter with WD. He went to college at the University of Colorado and graduated with a B.S. in finance.

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