The International Rett Syndrome Foundation is committed to advancing and expanding our community’s access to best-in-class Rett syndrome care. Toward that end, we are designating 15 partner clinics across the U.S. to our Center of Excellence Network.
“Establishing this network is part of IRSF’s goal to get families the expert Rett clinical care that their loved ones need to thrive,” says IRSF CEO Melissa Kennedy, “Our goal is that the vast majority of families living with Rett syndrome have access to a Rett syndrome expert by 2023.”
Most local providers are not trained on Rett syndrome, and many families find it difficult to locate a physician who knows how to care for individuals with Rett. Further, once they find an expert provider, these families may have to travel for an entire day to reach that expert’s clinic and the life-changing healthcare insights it offers.
“When [our local physicians] meet Anna, it’s clear they [know little] about Rett syndrome,” explains Toyua Oalmann, whose daughter Anna has Rett syndrome, “I’m so grateful for our Rett specialists. I will ask them before I consult our local physicians.”
We hope that recognizing clinics as Centers of Excellence will make it easier for families to identify the nearest Rett expert. Additionally, each Center of Excellence will have the option to expand its impact by mentoring external physicians. Through this physician-to-physician mentoring program, the 15 cities in which the Rett Syndrome Centers of Excellence are located have the potential to cover the entire US with access to expert Rett syndrome care.
Additionally, as we all know, there are currently no approved treatments for Rett syndrome. Our new network’s clinical trial research will play an essential role in ensuring therapeutic development progresses as quickly as possible.
“The infrastructure created by our Center of Excellence partners allows us to aggressively engage in clinical research,” says IRSF CSO Dominique Pichard, MD, “This is the only way to make treatment options and curative therapies a reality for ALL families living with Rett syndrome.”
We are grateful to all the members of our new Center of Excellence network for their partnership in our work to create a world without Rett syndrome. For some clinics, this is a re-designation that demonstrates their ongoing commitment to providing excellent care to the Rett syndrome community.
The clinics receiving Center of Excellence redesignation are:
- Boston Children’s Hospital – Boston, MA
- Children’s Hospital Colorado – Denver, CO
- Children’s Hospital of Philadelphia – Philadelphia, PA
- Gillette Children’s Specialty Healthcare – St. Paul, MN
- Greenwood Genetic Center – Greenwood, SC
- Rush University Medical Center – Chicago, IL
- St. Louis Children’s Hospital– St. Louis, MO
- Texas Children’s Hospital – Houston, TX
- University of Alabama-Birmingham – Birmingham, AL
- UCSF Benioff Children’s Hospital Oakland – Oakland, CA
- Vanderbilt University Medical Center – Nashville, TN
The new Center of Excellence clinics are:
- Center for Rare Neurological Diseases – Atlanta, GA
- Children’s Health – Dallas, TX
- Kennedy Krieger Institute – Baltimore, MD
- Montefiore Medical Center – Bronx, NY
These clinics already serve many of our families. Each of them has demonstrated expertise in Rett syndrome care and a commitment to clinical research by meeting the following requirements established by our Medical Advisory Board:
- A physician director with expertise in Rett syndrome care
- Health care services that meet the unique needs of individuals with Rett
- Involvement in clinical trials
- Increase understanding of Rett syndrome by contributing to a clinical registry
The new two-year Center of Excellence designation will officially go into effect on June 1, 2021.