Alstrom syndrome

Healthcare/Doctors

Are there any centers of excellence in Alstrom syndrome?

The best way to obtain the most accurate, current, clear, and comprehensive information is to be seen at a center or clinic that specializes in Alstrom syndrome. At most centers that specialize in rare disorders, you will see a medical geneticist, genetic counselor, and nurse who work as a team to answer your questions, discuss testing, identify your at-risk family members, and develop a comprehensive evaluation and treatment plan for you. They will work with your current doctors to organize the treatment, tests, and specialists you need.

As of February 2021, Alstrom Syndrome International, a U.S.-based nonprofit support group for Alstrom syndrome, lists 5 research institutes or medical centers with an interest in Alstrom syndrome:

  • The Jackson Laboratory, Bar Harbor, ME, USA
  • University School of Medicine, Padua, Italy
  • The Hospital for Sick Children, Toronto, ON, Canada
  • Birmingham Children's Hospital, Birmingham, UK
  • The Swedish Institute for Disability Research, Örebro University Hospital
References
  • Alstrom Syndrome International https://www.alstrom.org/
  • Marshall, JD et. al. (2019, June). GeneReviews. Alstrom Syndrome. Retrieved on February 23, 2021 from https://www.ncbi.nlm.nih.gov/books/NBK1267/
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What specialist doctors should I see with Alstrom syndrome?

What specialist doctors should I see with Alstrom syndrome?

Rare diseases that affect multiple organ systems, such as Alstrom syndrome, can benefit from a multidisciplinary approach. This approach involves healthcare professionals with specialized skills and expertise. They work together to make treatment recommendations and to provide quality care to individuals and families. Medical center or research institutes that work with Alstrom syndrome families will have a multidisciplinary team.

The specific doctors that will be a person's medical team will depend upon the specific symptoms that develop. A multidisciplinary team can include doctors who specialize in disorders of the eyes (ophthalmologists), doctors who specialize in hearing (audiologists), doctors who specialize in the kidneys (nephrologists), doctors who specialize in the heart (cardiologists), doctors who specialize in the muscles and skeleton (orthopedists), doctors who specialize in the endocrine system, the system of glands that produces and secretes hormones that the body needs for a wide variety of functions (endocrinologists), and doctors who specialize in the gastrointestinal system (gastroenterologists).

Other types of doctors and medical personnel that may see a child with Alstrom syndrome include medical geneticists, genetic counselors, physical therapists, psychiatrists, and psychologists.

Your family physician or pediatrician can help you locate specialists in your area.

References
  • Marshall, JD et. al. (2019, June). GeneReviews. Alstrom Syndrome. Retrieved on February 23, 2021 from https://www.ncbi.nlm.nih.gov/books/NBK1267/
  • Alstrom syndrome. The National Organization for Rare Disorders website. Accessed February 23, 2021. https://rarediseases.org/rare-diseases/alstrom-syndrome/

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