Other Names for this Disease
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- The Cystic Fibrosis Foundation funds and accredits 115 cystic fibrosis care centers nationwide, including 94 adult programs. In addition, 54 affiliate programs provide multi-disciplinary care for CF with Foundation support. Staffed by teams of dedicated medical professionals, these centers provide CF care, including nutrition, pulmonary care and gastroenterology, as well as psychosocial specialties. To learn more about these centers as well as find one near you, click on the Cystic Fibrosis Foundation link.
- The National Center for Medical Home Implementation (NCMHI) is for health professionals, families, and anyone interested in creating a medical home for all children and youth. A medical home is an approach to providing comprehensive primary care that facilitates partnership between patients, physicians, and families. NCMHI is a cooperative agreement between the Maternal and Child Health Bureau (MCHB) and the American Academy of Pediatrics (AAP) with a mission to ensure that every child and youth has access to a medical home.
- To find a medical professional who specializes in genetics, you can ask your doctor for a referral or you can search for one yourself. Online directories are provided by GeneTests, the American College of Medical Genetics, and the National Society of Genetic Counselors. If you need additional help, contact a GARD Information Specialist. You can also learn more about genetic consultations from Genetics Home Reference.
- The Catalyst Center is dedicated to improving health care coverage and financing for children and youth with special health care needs. They provide a directory of organizations, sorted by state, which may be able to provide assistance to families with questions about coverage and financing of care for children with special health concerns.
- The HealthWell Foundation provides financial assistance for underinsured patients living with chronic and life-altering conditions. They offer help with drug copayments, deductibles, and health insurance premiums for patients with specific diseases. The disease fund status can change over time, so you may need to check back if funds are not currently available.
- The Assistance Fund provides various services, including education and financial aid, to help patients with a chronic or serious illness cover the cost of FDA-approved medications. Patients must be U.S citizens or permanent residents.
- The Genetics Education Materials for School Success (GEMSS) aims to assure that all children with genetic health conditions succeed in school-life. Their Web site offers general and condition-specific education resources to help teachers and parents better understand the needs of students who have genetic conditions.
- Family Voices aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities. They provide families with resources and support to make informed decisions, advocate for improved public and private policies, and build partnerships among families and professionals. Click on the link to find a Family-to-Family Health Information Center in your state.
- The Institute for Community Inclusion (ICI) supports the rights of children and adults with disabilities to participate in all aspects of the community. As practitioners, researchers, and teachers, they form partnerships with individuals, families, and communities.