Category

Research

Rettsyndrome.org Announces New Scientific Advisory Board

Thursday, April 30, 2020

Exceptional Group of Scientific Leaders to Guide Foundation’s Research Investment As Rettsyndrome.org’s Chief Science Officer, a physician, and a mom to a teenager with Rett syndrome, I am dedicated to overcoming the challenges presented by Rett syndrome’s complexity on the research front. Recognizing that the best way to do this is to have input from … Read More

Acadia pharmaceutials

ACADIA Announces Launch of Phase 3 LAVENDER Study for Trofinetide

Wednesday, October 30, 2019

Dear Rett Community, Today we took a significant step forward with the trofinetide clinical development program initiating the pivotal Phase 3 LAVENDER study. As we have shared before, LAVENDER is a 12-week study that will evaluate the efficacy and safety of trofinetide versus placebo in approximately 180 girls and young women aged 5 to 20 … Read More

Dr. Dominique Pichard

Rettsyndrome.org Announces New Chief Science Officer with Rett Syndrome Connection

Tuesday, September 17, 2019

The International Rett Syndrome Foundation (doing business as Rettsyndrome.org) has officially welcomed Dominique Pichard, MD to the organization as their new Chief Science Officer. A highly accomplished clinician and researcher, Dr. Dominique Pichard brings years of hands-on experience conducting critical work in clinical trials with the National Institutes of Health (NIH), pharmaceutical companies, and the … Read More

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

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