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
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
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
Dr. Steven Kaminsky Retiring, RSO Honors Chief Science Officer Chief Science Officer Dr. Steven Kaminsky has announced his retirement this spring. Steve has served faithfully for the last seven years advancing research toward the treatment and cure of Rett syndrome. Instrumental in connecting trofinetide – a compound developed under the Department of Defense to treat … Read More
Connecting Families to Research From the beginning, Rettsyndrome.org (RSO) has been dedicated to accelerating research for the treatment and cure of Rett syndrome. We are equally dedicated to connecting families with information and tools to persevere through the many challenges they face while they wait for a cure. The generous support of our families and … Read More