New Research Funding to Provide Hope to Girls and Boys

Jeannie T. Lee, MD, Ph.D and Davut Pehlivan, MD

New Research Funding to Provide Hope to Girls and Boys

Tuesday, June 4, 2019

Rettsyndrome.org Funds Research to Provide Hope for Females and Males Affected by MECP2 Mutation. CINCINNATI, OH – June 3 – Rettsyndrome.org announced their funding of two new research projects today. Jeannie T. Lee, MD, Ph.D. of Massachusetts General Hospital is awarded a two year ANGEL Grant for $600,000 to focus on reactivating the silent X … Read More

Learning Collaborative Group Shot

RSO Hosts Learning Collaborative for Rett Clinics

Tuesday, June 4, 2019

Rettsyndrome.org hosted a clinical Learning Collaborative on May 8 and 9 in Denver. The Learning Collaborative is made up of physicians and clinicians from Rett clinics around the country who volunteered their time to share ideas in the spirit of advancing care for Rett families, and to create a universal standard of excellence across all … Read More

Dr. Horrigan

Rettsyndrome.org Appoints Joseph Horrigan, MD to Board of Directors

Friday, May 3, 2019

Rettsyndrome.org Appoints Joseph Horrigan, MD to Board of Directors CINCINNATI, OH – May 3 – Rettsyndrome.org is pleased to announce that Joseph P. Horrigan, MD has joined its Board of Directors. Dr. Horrigan’s appointment follows the excitement of several research and clinical trial advancements supported or developed through Rettsyndrome.org. Dr. Horrigan is a pediatric neuropsychiatrist … Read More

Little girl with rettsyndrome

You are not alone

Monday, April 29, 2019

Did your child recently receive a Rett syndrome diagnosis? You are not alone. Rettsyndrome.org meets you at diagnosis and helps you through every facet of this unexpected journey. Our mission is to accelerate research toward treatment and a cure, but we are also committed to empowering families. It’s essential that families are equipped with information, … Read More

Positive Phase 2 Study Results of Trofinetide in Pediatric Rett Syndrome Published in Neurology

Wednesday, March 27, 2019

Positive Phase 2 Study Results of Trofinetide in Pediatric Rett Syndrome Published in Neurology, the Medical Journal of the American Academy of Neurology — Statistically Significant Improvement Indicates Trofinetide’s Potential for Treating Rett Syndrome — Trofinetide for Rett Syndrome has Fast Track Status and Orphan Drug Designation in the U.S. and Orphan Drug Designation in … Read More

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