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CDKL5 Centers Of Excellence

The International Foundation for CDKL5 Research has established 10 Centers of Excellence in the United States at major academic centers.

Explore Our Centers

The IFCR’s CDKL5 Centers of Excellence help affected families access a team of multi-disciplinary specialists. The Centers ease the burden on families by bringing all the specialists together instead of taking their affected loved ones to multiple appointments. This saves families time and hassle while ensuring that their medical team is informed and can work together. Each CDKL5 Center of Excellence team consists of various specialties, including epilepsy, genetics, gastroenterology, physical medicine, rehabilitation, and palliative care.

Our CDKL5 Centers of Excellence continually work to advance our understanding of CDKL5 Deficiency Disorder. They are researching how the condition unfolds so they can develop standards of care for all those affected.

IFCR’s sponsorship makes the CDKL5 Centers of Excellence possible. We provide the coordination to bring the specialists together and fund the multi-Center research. Each Center requires several months or even years to establish, as there are numerous legal, ethical, and financial considerations to arrange.

Find Your Center of Excellence

Boston Children's Hospital

View Boston Center

Children's Hospital Colorado

View Denver Center

Children's Hospital Montefiore

View 2nd New York Center

Children’s Hospital of Philadelphia

View Philadelphia Center

Cleveland Clinic

View Cleveland Center

Monroe Carell Jr. Children’s Hospital at Vanderbilt

View Tennessee Center

NYU Langone Health Center

View New York Center

St. Louis Children’s Hospital

View St. Louis Center

Texas Children’s Hospital

View Texas Center

UCLA Mattel Children’s Hospital

View Los Angeles Center

Unfortunately, the IFCR is not able to fund patient care. Each Center of Excellence can advise on which types of insurance they accept and what payment plans may be available. Please contact them directly using the links above.