Rettsyndrome.org names 14 Clinics as Clinical Research Centers of Excellence

October 25, 2016

Rettsyndrome.org names 14 Clinics as Clinical Research Centers of Excellence

(Cincinnati, OH) The International Rett Syndrome Foundation now doing business as Rettsyndrome.org, is launching an innovative clinic program, designating 14 clinics in the United States as Rett Syndrome Clinical Research Centers of Excellence, it announced today.

At the heart of these Clinical Research Centers of Excellence, is a team of specialists with substantial experience in the diagnostic evaluation, and treatment of individuals with Rett syndrome. Critical to these centers is the fact that they partner with families and community healthcare providers to deliver care that is comprehensive and appropriate for a family's individual needs. Physician specialists, nurses, therapists, and care managers all support the individuals' care management and coordination. In addition, these clinics are dedicated to streamlining care delivery.

Rettsyndrome.org's Chief Science Officer, Steve Kaminsky, PhD comments on the clinic centers of excellence designation, "As a rare disease, the Rett community is fortunate to have these 14 Clinical Research Centers of Excellence. The clinicians, nurses and the medical team are deeply committed to the care of individuals with Rett syndrome, while being heavily involved in clinical research through the Rett Consortium and the Natural History Study. These clinics understand our mission and make it possible accelerate research and empower families."

14 Rettsyndrome.org Clinical Centers of Excellence


1. Alabama - University of Alabama Birmingham Civitan International Research Center, Birmingham
2. California - University of California San Diego, Rady Children's Hospital, San Diego
3. California - University of California San Francisco Benioff Children's Hospital Oakland, Walnut Creek
4. Colorado - Children's Hospital Colorado, Aurora
5. Illinois - Rush University Medical Center, Chicago
6. Massachusetts - Boston Children's Hospital and Harvard Medical School
7. Minnesota - Gillette Children's Specialty Healthcare, Saint Paul
8. Missouri - Washington University School of Medicine Saint Louis Children's Hospital, Saint Louis
9. New York - University of Rochester Medical Center, Rochester
10. Ohio - Cincinnati Children's Hospital Medical Center, Cincinnati
11. Pennsylvania - Children's Hospital of Philadelphia, Philadelphia
12. South Carolina - Greenwood Genetic Center, Greenwood
13. Tennessee - Vanderbilt University School of Medicine and Vanderbilt Kennedy Center for Research on Human Development, Nashville
14. Texas - Texas Children's Hospital, The Blue Bird Circle Rett Center, Houston
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About Rettsyndrome.org

Rettsyndrome.org is the most comprehensive nonprofit organization dedicated to accelerating research of treatments and a cure for Rett syndrome to accelerate full spectrum research to treat and cure Rett syndrome while empowering the community through knowledge and connectivity.

As the world's leading private funder of Rett syndrome research, Rettsyndrome.org has funded over $38M in high-quality, peer-reviewed research grants and programs to date. The organization hosts the largest global gathering of Rett researchers and clinicians to establish research direction for the future. Rettsyndrome.org, a 501(c)3 organization, has earned Charity Navigator's most prestigious 4 star rating year after year. To learn more about our work and Rett syndrome, visit http://www.rettsyndrome.org or call (800) 818-7388 (RETT).

Rettsyndrome.org

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