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The Rett Clinic at Children’s Hospital Colorado

The Rett Clinic was formed early in 2010 through a partnership between the Rocky Mountain Rett Association and the Children’s Hospital Colorado. An initial gift from RMRA has funded the establishment and initial coordination staff of the Clinic. RMRA provides ongoing funding and depends on donations to continue and expand Clinic operations.

MULTI-DISCIPLINARY CARE IN ONE CONVENIENT PLACE

The Rocky Mountain Clinic does not just want to discover better treatments and a cure! We are striving to change lives! Imagine having to go to various doctors in different buildings, at different times, potentially even in a wheelchair… But not here at the Rett Clinic! One of our top goals when establishing this Clinic, was to provide a place where the doctors come to the patients, not the other way around. So Rett Families conveniently stay in one. But besides the convenience, we also wanted to provide a variety, a multidisciplinary clinic. On each clinic day, we bring together up to 15 sub-specialty providers and therapists to provide a comprehensive evaluation for your child. Our providers work closely together and may refer children for additional help when needed.

What you need to know

  • Clinic sessions are hosted twice a month by Children’s Hospital Colorado. RMRA provides liaisons to families visiting the clinic.

  • The Clinic will serve patients with Rett Syndrome and Rett-like disorders. Each clinic serves up to 8 patients per day or 96 per year. With additional funding support, the clinic will be able to continue to provide care for these patients and their families.

  • The Clinic is regional by design but is open to families throughout the United States.

  • The Clinic will serve all patients with a positive genetic test for Rett Syndrome (Typical, Atypical, Male) and Rett-related disorders, such as CDKL5 Deficiency Disorder, FOXG1 Syndrome, MECP2 variance, and will not discriminate on the basis of age, sex or any other objective factor. We see patients for their entire life through our Rett Clinic Program.

  • The RMRA gift provides for a part-time registered nurse coordinator, medical director support, and some discretionary funds.

  • Clinic operations are funded in collaboration with RMRA, Children’s Hospital Colorado, and the International Foundation for CDKL5 Research. We are always looking for more partners to help keep our clinic in operation.

Meet the Rett Clinic’s Clinical Specialty Coordinator and Administrative Service Coordinator!

Meet the Rett Clinic Team

Up to 15 specialists can meet your Rett child in one convenient visit.

Our team has developed a wealth of experience and knowledge about Rett and Rett-like disorders, and we’re recognized as national and international leaders in the field. We collaborate with other programs and practitioners from across the world, and we strive to develop and provide the most up-to-date care based on research and care guidelines.

What to expect at your appointment:

During your visit, you may see providers from the following sub-specialties:

  • Nutrition

  • Physical Therapy

  • Speech Therapy

  • Nursing

  • Social Work

  • Occupational Therapy

  • Family networking via a family luncheon, and break room with refreshments are provided by the Rocky Mountain Rett Association to help you connect with others.

  • Neurology

  • Rehabilitation

  • Developmental Pediatrics

  • Pulmonary

  • Cardiology

  • Orthopedic Surgery

  • Genetics

  • Gastroenterology

  • Behavioral Psychology


Location:

Children’s Hospital Colorado, 13123 E 16th Ave, Aurora, CO 80045

Contact:

For more information about the Clinic and how to attend, contact Tristen Dinkel CNRN, CPN, RN, BSN, Rett Program Coordinator, Neuroscience Institute, phone: 720-777-4798 (NEW NUMBER!), email: rettclinic@childrenscolorado.org


Patients are coming from all over the US! Check out the US map with the numbers of patients that are traveling to the Rett Clinic at Children’s Hospital Colorado from all over the US.

Details

The Clinic is open every 2nd Wednesday of the month. With a full clinic, the doctors and therapists are seeing follow up patients in the morning and new patients in the afternoon. Thank you to generous donations we are able to expand the clinic days and offer a send morning each month starting in April 2023.

Please be considerate when you make an appointment. No-shows have been a big challenge. The Rett Clinic has a back log and is only open one day per month! If you cannot make an appointment, please let us know in advance.

New Patients:

  • April 9th, 2025

  • May 14th, 2025

  • June 11th, 2025

  • July 9th, 2025

  • August 13th, 2025

  • September 10th, 2025

  • January 8th, 2025

  • February 12th, 2025

  • March 12th, 2025

Follow up Patients:

  • January 8th, 2025

  • January 15th, 2025

  • February 12th, 2025

  • February 19th, 2025

  • March 12th, 2025

  • March 19th, 2025

  • April 9th, 2025

  • April 16th, 2025

  • May 14th, 2025

  • May 21st, 2025

  • June 11th, 2025

  • June 18th, 2025

  • July 9th, 2025

  • July 16th, 2025

  • August 13th, 2025

  • August 20th, 2025

  • September 10th, 2025

  • September 17th, 2025

  • October 8th, 2025

  • October 15th, 2025

  • November 12th, 2025

  • November 19th, 2025

  • December 10th, 2025

  • December 17th, 2025

  • October 8th, 2025

  • November 12th, 2025

  • December 17th, 2025

How to help

Your donation will help maintain the Rett Clinic:

  • We will not be able to continue the clinic without your help and donations from our community.

  • More frequent clinics could be on the horizon if we can find more voices for our patients.

  • Research opportunities are underfunded. We have partnered with the International CDKL5 Foundation for these efforts. Research efforts include collaborative patient registries, biobanking and eventual clinical trials.

Donate today

Make a difference today to a child with Rett Syndrome.

Give hope, strength and the possibility of a cure!

In 2017 the Rett Clinic proudly accepted the CENTER OF EXCELLENCE AWARD by Gordy Rich, COO of RettSyndrome.org. Read more about this on our blog.

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Image: Gordy Rich, COO of Rettsyndrome.org (right) presents the award to Dr. Tim Benke, MD, PhD, Rett Clinic Medical Director and Director of Research-Neurosciences Institute (left) and Tristen Dinkel CNRN, CPN, RN, BSN, Rett Program Coordinator, Neuroscience Institute (middle).

Read what parents say about the Rett Clinic at Children’s Hospital Colorado

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“On a clinic day, the family gets their own exam room to set up shop and the specialists come to you. These kids can require so many different doctors visits. But at the Rett Clinic, you can see 12 different specialists in one day. Can you imagine trying to coordinate all of those visits separately?”

-Diana Wyman Kamp

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“The Rett Clinic was a well-oiled machine, where doctors, therapists, nutritionists, social workers and nurses gave suggestions on how to improve Tatum’s quality of life.”

-Tania Moore