OHSU

CDRC Rett Syndrome Program

About Us

The Rett syndrome Program at CDRC is focused on a neurodevelopmental disorder that affects girls almost exclusively. CDRC can help you diagnose and treat your child if they are positively identified as having Rett syndrome.

Our mission is to provide state-of-the-art services for patients withRett syndrome through intervention, education and research aimed at effective treatments and cures.We ensure that each patient will have continuity of care from infancy through adolescence and adulthood.

Our main clinical efforts are focused on: Providing multi disciplinary care for patients. Conducting pre-clinical and clinical research in order to extend knowledge and treatment of Rett syndrome. Promoting education and support for caregivers, family members, health care providers,and the community.

Learning About Rett Syndrome

Rett syndrome is an autism spectrum disorder and the most common genetic cause of severe impairment in girls, caused by mutations in a gene for Methyl-CpG binding protein 2 (MECP2), which locates on Xq28.

Children with Rett syndrome appear to develop normally until 6 to18 months of age, when they enter a period of regression, losing speech and motor skills. Many patients develop repetitive hand movements, irregular breathing patterns, seizures and extreme motor control problems.

Although, classified as a neurological disorder,in reality patients with Rett syndrome often have multiple diagnoses, including: reflux,constipation, poor nutrient absorption, irregular breathing, autonomic dysfunction, biting/chewing/ swallowing difficulties,scoliosis, teeth grinding and dental problems, abnormal sleep patterns,irritability,anxiety,etc.

 

Resources

The National Organization for Rare Disorders (NORD) was created on behalf of the 30 million Americans who live with one or moreof 7,000 rare diseases. NORD strives to identify, treat, and cure rare disease through education, advocacy, research, and service. Find out more information at:  www.rarediseases.org

The National Center for Biotechnology Information advances science and health by providing access to biomedical and genomic information. It has documented extensive research,information,and clinical material on Rett syndrome. More information can be found on their website: www.ncbi.nlm.nih.gov/books/NBK1497

Making A Referral

While many insurance companies allow patients to self-refer,we prefer to work directly with each child's primary care physician to ensure collaborative care.

As a result,we do require aphysician referral for most of our CDRC patients. Please call,or view the website of each specific program.

Please contact our scheduling office for additional referral information at:

Phone: 503 494-8095

Tollfree: 800 452-3563

Fax: 503 346-0645

Location

CDRC Programs operate on the 7th floor of the Doernbecher Children's Hospital at:

707 SW Campus Drive

Portland, OR 97239

CDRC Administration address:

Child Development & Rehabilitation Center

707 SW Gaines Street

Portland, OR 97239