Where Care meets Cure:
The growth of Rett Clinics & Centers in North America

August 4, 2014

By early 2015, Rettsyndrome.org will have helped inspire the development, growth and networking of 18 Rett specialty centers in North America, all passionately supporting our children and rapidly spreading the news that care and cure are linked hand in hand.

Our strategy to build bridges across specialty centers was initiated in 2004 and gained traction with our funding of the Natural History Study travel sites, and really got going in earnest by 2009 when we began organizing clinic-inclusive conference calls.

We started by bringing a handful of Rett Center medical directors in the U.S. together for "deep dives" on specific symptoms or issues that were raised again and again by the parents supported by Rettsyndrome.org The goal:

  • to encourage dialog
  • to reach consensus on current treatments
  • to deepen collaborative relationships
  • to challenge standards of care
  • to inspire clinical research

Nothing like this existed previously for this Rett syndrome professional network of U.S. Rett syndrome expert clinicians. We helped open the door. The opportunities and expense involved with bringing doctors together for this kind of important interaction just couldn't be realized on any kind of regular basis; however, conference calls and online screen sharing is easy. We can do that; so we do!

Recently we gathered all these centers together again by conference call, for an all-encompassing discussion about the clinic format. We took this opportunity to identify the go-to-individuals in order to make more convenient referrals for families. 

The purpose of the call was to collaborate, inspire and ignite their passion and interests, as well as impressing the fact that they are not isolated, but have each other to discuss and cross-pollinate ideas.

Topics of previous calls have included:

  • seizures
  • Long QT
  • dystonia
  • gastro issues
  • irregular sleep patterns
  • irritability
  • breathing issues
  • regression
  • diagnostic criteria changes
  • Parkinsonism
  • orthopedics

...and the list goes on. Rett syndrome is complex, there is a spectrum of severity across patients, and across the life span, but we have a host of people who care to help improve these issues.

We have specialists who know specific body systems AND how they are impacted by Rett syndrome working in concert, one symptom at a time.

Doctors are passionate, smart, caring individuals who constantly amaze with their ability to meet patient needs, pursue research interests, and navigate an ever changing healthcare landscape that demands they see more patients in shorter appointment times than ever before.

This program means that these professionals now get to know and work in concert with each other, to bring meaningful change, through collaboration, and enabling faster transfer of knowledge through the Network.

We all know how precious time is when we hope to deliver new treatments. This networking will foster change big and small to deliver new treatments, and possibly simple interventions, to our children that could make a small but meaningful improvement.

Rettsyndrome.org is thrilled to cultivate the idea of NETWORKED centers; our successes in this field mean that we are regularly asked to consult on how to bring this clinic model to more cities in the U.S., and to more countries around the world.

Parents struggle watching their children struggle; not knowing what to do, they turn to our staff, listservs, the Rett Syndrome Handbook, and social media for advice. These resources are all wonderful, but do have their limitations.

Local physicians unfamiliar with Rett syndrome also struggle; they too turn to us for information and insight. We often refer them to our Rett experts for clinician-to-clinician consultation.

We have worked hard to ensure we have these fantastic resources in place.

Our commitment and dedication mean that these NETWORKED centers will grow, conference calls will continue, and meetings will convene.

Better treatments, interventions and a cure will happen because when you bring a group of passionate people together who care about one thing, the health of our children, amazing things happen.

We'll share more information about what’s going on clinically around the rest of the world next – there are caring doctors everywhere already working on Rett syndrome, or just waiting to be recruited!

Why You Ask?

Rett syndrome outcome is improving with time: greater life expectancy and improved overall health. Rettsyndrome.org agrees that clinician focus and family empowerment are the absolute essential ingredients that have resulted in this progress, and we want more of it.

Read Dr. Alan Percy's recent Guest SFARI blog and you'll see it too: http://sfari.org/news-and-opinion/blog/2014/guest-blog-rett-outcome-is-improving-with-time

Let us know your thoughts. If you are interested in opening a clinic, reach out to Paige Nues (pnues@rettsyndrome.org or 510-499-3858) to learn more. To find the clinic nearest you, visit: http://www.rettsyndrome.org/for-families/clinics

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