Medical Advisory Board to Set Best-in-Class Care, Rettsyndrome.org Says

Rettsyndrome.org has launched the International Rett Syndrome Foundation Medical Advisory Board, aiming to enhance care and research to help people with the neurodevelopmental disorder, according to the non-profit.

The Advisory Board, composed of 11 Rett syndrome experts across leading hospitals and academic centers in the U.S., is chaired by Elizabeth Berry-Kravis, MD, PhD, a pediatric neurologist at the Rush University Medical Center with experience in treating patients with Rett.

“In order for a community of patients and families to have access to best-in-class care and clinical trials, an active and engaged clinical network is critically essential,” Berry-Kravis said in a news story from Rettsyndrome.org.

“I want to commend Rettsyndrome.org on their decision to create and support this network. I am honored to chair this activity on behalf of my clinical colleagues and the Rett syndrome patients we serve,” she added.

Berry-Kravis is an expert in fragile X syndrome, the most common inherited cause of autism and intellectual disability, and the co-director of the molecular diagnostics section of the genetic laboratory at Rush.

The other board members are Tim Benke, MD, PhD; Sasha Djukic, MD, PhD; Tim Feyma, MD; Daniel Glaze, MD; Mary Jones, MD; David Lieberman, MD, PhD; Eric Marsh, MD, PhD; Jeffrey Neul, MD, PhD; Alan Percy, MD; and Robin Ryther, MD, PhD. More information about the additional 10 members can be found here.

The team’s task is to define the criteria for the creation of Rett Syndrome Centers of Excellence, what the non-profit calls an essential step for providing the “best-in-class” care for patients. The centers will work to obtain data to aid research in the U.S. and across the world.

Rettsyndrome.org hopes that the newly formed network will become the “go-to” resource for families, scientists, clinicians, and pharmaceutical companies globally.

“We are honored and thrilled to have this group of Rett syndrome experts partner with us as we continue to advance our aggressive research agenda to get treatments and, ultimately, a cure for our loved ones living with Rett syndrome,” the organization said.

Rettsyndrome.org highlighted the need to maintain Rett syndrome clinics as platforms for clinical trials. “Without clinics ready to carry out clinical trials, amazing scientific breakthroughs for Rett syndrome will never have the opportunity to become an available FDA-approved therapeutic,” the organization added.

In addition, the Rett Syndrome Centers of Excellence are intended to help advise clinicians in areas without specialized clinics.

The new Medical Advisory Board, along with Rettsyndrome.org’s Scientific Advisory Board, will guide the non-profit’s investments to maximize the impact on the lives of people with Rett.