LINKS & RESOURCES:
ADDITIONAL INFORMATION & RESOURCES
Angel Flight America
A national network of seven aviation charities handling long-distance charitable medical air transportation in the U.S.
Offers book reviews and books for sale related to congenital heart diseases.
Band-Aides & Blackboards
A kids' oriented site written by a nurse. Creatively teaches kids, parents and educators how to deal with kids with medical conditions.
Care.com - Special Needs Resources & Articles
Provides an online directory of parent-reviewed special needs and respite caregivers organized by zip code, in addition to guides and articles on special needs child care issues.
CCF Family Assistance Program
Information on CCF's program designed to assist low-income families with cardiomyopathy-related medical and non-medical needs when insurance and other financial resources have been exhausted.
The Center for Children with Special Needs: Care Notebook
Handy parent organizer with downloadable forms for managing your child's special health care needs including appointments and medications. Produced by Seattle Children's Hospital.
Children's Heart Federation
UK based federation of support groups that provides various information sheets on common issues related to caring for a child with a heart condition.
Congenital Heart Defects.com
Sponsored by Baby Heart Press, this site offers information and resources about
different types of congenital heart defects and common concerns to heart families.
"Emergency Preparedness for Children with Special Health Care Needs"
Universally accepted, standardized forms and guidelines for pediatricians,
health care providers and caregivers. Produced by the Committee on Pediatric
Erika Kate Foundation
Provides financial assistance to parents or guardians of children who are in the midst of a serious medical crisis related to a heart condition.
First Hand Foundation
A philanthropic organization that helps families of children with health problems address the financial aspects of their child's healthcare.
Genes in Life
Site answers questions about health and genetics covering how genetics work, the impact of genetics on families, genetic diseases, genetic testing and how to get involved with research.
The Genetic Alliance
An international coalition of individuals, professionals and advocacy/support
organizations impacted by genetics. Provides information and updates on discrimination, testing, newborn screening and public policy related to genetics.
Genetics Education Materials for School Success (GEMS)
Features information that schools can use to support students with genetic conditions. Includes a library of tools and tips covering educational support, dietary needs, field trips and sports.
Provides information on housing for families during hospitalization, support services, and links to other resources.
Provides free cardiovascular implantable devices and cardiac care to qualified patients in developing countries.
Provides doctor approved health information about children from birth through
adolescence. Offers practical, easy to understand information on chronic childhood
Leading emergency medical identification and information service.
National Association of Hospital Hospitality Houses
Provides homelike lodging near major hospitals to persons
who must travel to receive outpatient
care or need to be with a patient receiving treatment.
The National Center for Education in Maternal and Child Heath
Provides national leadership in program development, education, and state-of-the-art
knowledge related to maternal and child health. Large collection of patient
education materials, and will reply to requests for information from the general
The National Information Center for Children and Youth with Disabilities - State Resource Sheet
Helps locate state organizations and agencies that address special needs issues
such as early intervention, special educational programs and parent groups.
National Institutes of Health - Genes and Gene Therapy
Basic overview about genetic disorders, genetic terms, clinical research, federal and state legislation, and genetic testing as presented by the National Human Genome Research Institute.
Maintains a website of information on programs for individuals who need financial assistance with healthcare treatments and medications.
NIH Office of Rare Diseases - Genetic & Rare Disease Information Center
Provides information on genetics and various genetic disorders to the general
public including patients and their families, healthcare professionals and
NIH Office of Rare Diseases - Patient Travel & Lodging
Links to charitable or special fare flights to research
or treatment sites, hospital hospitality houses and
fee-for-service ambulance services.
National Organization for Rare Disorders (NORD) Patient Assistance Programs
Provide medication, financial assistance with insurance premiums and co-pays, diagnostic testing assistance, and travel assistance for clinical trials or consultation with disease specialists.
National Patient Travel Center
Serves as a clearinghouse of information on charitable or discounted airline ticket programs for patients and patient escorts, including special child-lift services for U.S. clinical research centers.
Partnership for Prescription Assistance
Helps qualifying patients without prescription drug coverage get the medicines they need for free or nearly free.
Covers pediatric heart issues for kids, parents and practitioners. Parent support site provides information on the heart, surgical procedures, diagnostic tests, and a listing of children's hospital websites around the world.
Pediatric Oncology Resource Center - Airline Flights
Links and description to organizations that provide discounted
or free airline flights for patients that need to travel for medical reasons.
Ronald McDonald House
Works to create a world where children have access to quality health care and their families are better able to support and comfort them while actively participating in their care.
United Healthcare Children's Foundation
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This non-profit offers financial support for child healthcare treatment, services or equipment not covered or not fully covered by their existing health insurance benefit plans.