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Children's Cardiomyopathy FoundationChildren's Cardiomyopathy Foundation
The Children's Cardiomyopathy Foundation (C.C.F.)'s vision is to create a future of hope where pediatric cardiomyopathy can eventually be prevented and any affected child can be cured to live a full and productive life. Run entirely by volunteers and... Read more
The Children's Cardiomyopathy Foundation (C.C.F.)'s vision is to create a future of hope where pediatric cardiomyopathy can eventually be prevented and any affected child can be cured to live a full and productive life. Run entirely by volunteers and guided by a medical advisory board, C.C.F.'s purpose is to accelerate the search for a cure by supporting scientific and medical research into the causes, early detection and treatment of the disease. Additionally, C.C.F. promotes physician education, public awareness, patient support, and advocacy for affected children and their families.
In line with its mission, C.C.F. provides various programs related to pediatric cardiomyopathy - a rare and incurrable children's heart disease.
RESEARCH: C.C.F. intends to provide funding assistance for medical fellowships, clinical and genetic research studies, and comprehensive patient care programs.
EDUCATION: C.C.F. works with the National Pediatric Cardiomyopathy Registry in sponsoring think tank sessions and publication of medical findings. An International Pediatric Cardiomyopathy Symposium is also being planned for physicians and families.
ADVOCACY & AWARENESS: C.C.F. is involved in developing awareness programs and working with government, medical, scientific and lay communities to generate increased focus and funding of research on pediatric cardiomyopathy.
SUPPORT: C.C.F. offers a comprehensive website, discussion forum, pamphlet, and a membership directory for families. Peer support, physician referrals and linking families to relevant research studies are also provided when requested.
I have a 15 years old daughter with this problem
She had a heart transplant 4 years ago!
She never had any symptoms until July of 2012
Went after run to many Drs discovered that she had cardiomyopathy !!
On dic 1 of the same year she had her transplant!
Is for that
We need more research and more information about this terrible condition!!