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Care Management Toolbox

Finding Care

Barth Syndrome Clinics

There are two Barth syndrome specialty clinics in the world

Each interdisciplinary center is dedicated to the diagnosis and treatment of patients who have Barth syndrome.  Patients may see a variety of sub-specialists during their appointments at one of these clinics, including but not limited to clinicians with expertise in…

  • Mitochondrial Medicine
  • Cardiomyopathy
  • Neutropenia
  • Genetics and Family Planning
  • Nutrition and Feeding Difficulties
  • Hypotonia

Mitochondrial Care Network

It may not always be possible to for the individual to be seen at one of the centers where there is a Barth syndrome specific clinic.  Barth syndrome is a mitochondrial disease and metabolic care should ideally be managed by a physician with expertise in the area of mitochondrial medicine. 

The Mitochondrial Care Network represents a group of physicians at medical centers across the united states that have expertise in providing coordinated, multidisciplinary care for patients with genetic mitochondrial disease.  

Dr. Hilary Vernon, director of the Barth syndrome clinic also serves as the site director of the Mitochondrial Medicine Center located at the Johns Hopkins University and the Kennedy Krieger Institute. 

Children’s Cardiomyopathy Foundation Accredited Center of Care Program

The Children’s Cardiomyopathy Foundation’s Accredited Center of Care Program recognizes medical centers with expertise in pediatric cardiomyopathy.  Pediatric cardiomyopathy is a chronic illness that requires a team approach to provide comprehensive care.  In general, accredited centers manage a high volume of pediatric cardiomyopathy patients, offer a variety of pediatric patient services, specialize in the treatment and management of cardiomyopathy in children are affiliated with an academic institution with a research focus.

Severe Chronic Neutropenia International Registry (SCNIR)

The Severe Chronic Neutropenia International Registry (SCNIR) was established in 1994 to monitor the clinical course, treatment, and disease outcomes in patients with severe chronic neutropenia (SCN). The SCNIR has the largest collection of long-term data on patients with neutropenia in the world. They work with a physicians around the world who are have expertise in neutropenia care management.  Contact Audrey Anna Bolyard, RN, Clinical Manager, for referral to a physician with expertise in neutropenia.

The Pediatric Heart Transplant Society

The Pediatric Heart Transplant Society is a multidisciplinary, professional organization dedicated to advancing the science and treatment of children during listing for and following heart transplantation.  

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