The Angelman, Rett and Prader-Willi Syndromes Consortium Child looking up

What is the Angelman, Rett, and Prader-Willi Syndromes Consortium?

The Angelman, Rett, and Prader-Willi Syndromes Consortium is a team of doctors, nurses, research coordinators, and research labs throughout the U.S., working together to improve the lives of people with Angelman, Rett, and Prader-Willi Syndromes through research.

Since Angelman, Rett, and Prader-Willi Syndromes are rare, there are low numbers of research volunteers and this adds a greater level of difficulty for researchers struggling to learn more about these disorders.

The purpose of this consortium is to provide a way for patients to join with doctors and researchers by participating in research studies. The greater the collaboration between doctors and patients, the more we can learn about these disorders. This important first step is necessary if we are ever to find newer treatments.

Mission Statement

The mission of the Angelman, Rett and Prader-Willi Syndrome Consortium (ARPWSC) is to conduct clinical research and clinical trials to learn more about these disorders with the goal of developing new and better treatments to improve the care of patients with Angelman, Rett, and Prader-Willi Syndromes. The Consortium is also dedicated to clinical and scientific research in Angelman, Rett, and Prader-Willi Syndromes.  The Consortium also has laboratory researchers working to develop new treatments and new understandings for these disorders. We also seek to provide up-to-date information for patients and to assist in connecting patients with support groups, expert doctors, and clinical research opportunities.

Goals of the Angelman, Rett, and Prader-Willi Syndromes Consortium are to:

  • Provide patients and their physicians with the most up-to-date information possible about Angelman, Rett, and Prader-Willi syndromes
  • Link patients with doctors who specialize in Angelman, Rett, and Prader-Willi syndromes
  • Help patients learn about and get involved with clinical trials that may help in the treatment of their illness
  • Research new treatments and a cure for Angelman, Rett, and Prader-Willi syndromes
  • Ensure that clinical trials are held in several locations across the United States instead of in a single hospital
  • Better understand, diagnose and treat Angelman, Rett, and Prader-Willi syndromes
  • Provide better training for doctors and medical students about Angelman, Rett, and Prader-Willi syndromes

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