Other Names for this Disease
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- How to Find a Disease Specialist – A video developed by GARD Information Specialists that explains how you can find specialists for a rare disease.
- 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.
- Many individuals want to know about healthcare professionals or researchers who have knowledge of their conditions. When a condition is rare, it can be difficult to find someone who has seen many cases. Although there is no list of experts in rare diseases, GARD's How to Find a Disease Specialist fact sheet provides several ways to identify healthcare professionals who have experience with a particular condition. Click on the link to access this resource and learn more.
- 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.
- GARD's Genetics Resources Web page offers a collection of resources that provide information on genes, genomics, and genetic conditions, including family health history tools, a glossary of genetic terms, and more.
You may wish to discuss your concerns with a genetics professional. The following online resources can help you find a genetics professional in your community:
- The National Society of Genetic Counselors provides a searchable directory of US and international genetic counseling services.
- The American College of Medical Genetics has a searchable database of US genetics clinics.
- The University of Kansas Medical Center provides a list of US and international genetic centers, clinics, and departments.
- The American Society of Human Genetics maintains a database of its members, which includes individuals who live outside of the United States. Visit the link to obtain a list of the geneticists in your country, some of whom may be researchers that do not provide medical care.
- 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.
- GARD's Support for Patients and Families Web page offers resources for:
Travel and Lodging Assistance
- The Patient Advocate Foundation's Web site features tools that generate a list of national and regional resources which are dedicated to improving access to quality care and decreasing the financial burden of medical treatment. They have separate tools for those who are uninsured and underinsured:
National Uninsured Resource Directory
National Underinsured Resource Directory
- 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 Parent Technical Assistance Center Network provides a list of the Parent Training and Information Centers in each state. These centers are funded by the United States Department of Education to provide early intervention and special education information and training to parents of children with disabilities from birth to age 26. Click on the link to find the Parent 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.