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 one to multiple appointments. This saves families time and hassle, while ensuring that their medical team is kept informed and is able to work together. Each CDKL5 Center of Excellence team consists of a variety of specialties, including epilepsy, genetics, gastroenterology, physical medicine, rehabilitation and palliative care.
Our CDKL5 Centers of Excellence work to continually 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.
- Boston CDKL5 Center of Excellence
- Cleveland Clinic CDKL5 Center of Excellence
- Colorado CDKL5 Center of Excellence
- Los Angeles CDKL5 Center of Excellence
- New York CDKL5 Center of Excellence
- St. Louis CDKL5 Children’s Hospital
- Texas CDKL5 Center of Excellence
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.