Disease-Specific Organizations
Resources are listed alphabetically by condition.
AIDS
National Pediatric AIDS Network
Resource for information on HIV/AIDS from preconception through adolescents.
Arthritis
Arthritis Foundation
Information and resources for the approximately 294,000 children under the age of 18 who are affected by pediatric arthritis and rheumatologic conditions.
Asthma and Allergy
Asthma and Allergy Foundation of America
Free information and resources from the leading national nonprofit organization for people with allergies and asthma.
Autism
Autism Society of America
Raises and allocates funds to address the many unanswered questions about autism.
Asperger Syndrome
MAAP Services for Autism and Asperger Syndrome
Provides information and advice to families of more advanced individuals with Autism, Asperger Syndrome and Pervasive Developmental Disorder (PDD).
Batten Disease
Batten Disease Support and Research Association
Goals, support groups, local chapters, and resources for parents and families of Batten Disease patients.
Bone Marrow Transplant
Bone & Marrow Transplant Information Network
Publications and support services to bone marrow, peripheral blood stem cell, and cord blood transplant patients, survivors, and their loved ones.
Brain Tumors
Children's Brain Tumor Foundation
Dedicated to improving the treatment, quality of life, and long-term outlook for children with brain and spinal cord tumors through research, support, education, and advocacy to families and survivors.
Cancer
American Cancer Society
Dedicated
to eliminating cancer as a major health problem by preventing cancer,
saving lives, and diminishing suffering from cancer through research,
education, advocacy, and service.
American Childhood Cancer Foundation
A
national nonprofit membership organization whose mission is to provide
information and awareness for children and adolescents with cancer and
their families, to advocate for their needs, and to support research so
every child survives and leads a long and healthy life.
National Cancer Institute
Accurate, up-to-date, comprehensive cancer information from the U.S. government's principal agency for cancer research.
Cerebral Palsy
4MyChild
Compassionately
and efficiently provides essential information, vendor resources,
expert referrals, and unlimited inspiration to those living with
cerebral palsy or Erb’s palsy.
United Cerebral Palsy
Leading source of information on cerebral palsy and a pivotal advocate for the rights of persons with any disability; seeks to advance the independence, productivity, and full citizenship of people with disabilities through an affiliate network.
Cystic Fibrosis
Cystic Fibrosis Foundation
Seeking the means to cure and control cystic fibrosis and to improve the quality of life for those with the disease.
Diabetes
Juvenile Diabetes Research Foundation
The leader in research leading to a cure for type 1 diabetes in the world, setting the global agenda for diabetes research.
Epilepsy
Epilepsy Foundation
Provides trusted, reliable information for people with epilepsy and their caregivers.
Fanconi Anemia
Fanconi Anemia Research Fund, Inc.
Dedicated to finding effective treatments and a cure for Fanconi Anemia, and to provide education and support services to affected families worldwide.
Heart, Lung, and Blood Diseases
American Heart Association
Dedicated to reducing death caused by cardiovascular disease.
National Heart, Lung and Blood Institute, National Institutes of Health
Provides
global leadership for a research, training, and education program to
promote the prevention and treatment of heart, lung, and blood diseases
and to enhance the health of all individuals so that they can live
longer and more fulfilling lives.
Hemophilia
National Hemophilia Foundation
Dedicated
to finding better treatments and cures for bleeding and clotting
disorders and to preventing the complications of these disorders
through education, advocacy, and research.
Hydrocephalus
National Hydrocephalus Foundation
Seeks to provide a network for those affected by hydrocephalus, increase public awareness, and give moral support.
Kidney Diseases
National Institute of Diabetes and Digestive and Kidney Diseases
Conducts and supports research on many of the most serious diseases affecting public health; NIDDK research is organized into four divisions: diabetes, endocrinology, and metabolic diseases; digestive diseases and nutrition; kidney, urologic and hematologic diseases; and extramural activities.
Liver Diseases
American Liver Foundation
Provides information on liver diseases, as well as advocacy for education, treatment, and research funding.
Leukemia
National Children's Leukemia Foundation
Non-profit organization with a goal to fight against leukemia and cancer for children.
The Leukemia and Lymphoma Society
Fighting leukemia, lymphoma, Hodgkin's disease, and myeloma.
Lung Diseases
American Lung Association
Dedicated to saving lives by improving lung health and preventing lung disease.
Muscular Dystrophy
Muscular Dystrophy Association
Dedicated
to curing muscular dystrophy, ALS, and related diseases by funding
worldwide research; also provides comprehensive health care and support
services, advocacy, and education.
Neurological Disorders
Children's Neurobiological Solutions
Nonprofit research foundation dedicated to improving the lives of children disabled by neurological disorders through research focused on brain repair and regeneration.
Rare Diseases
National Institutes of Health Office of Rare Diseases Research
Aims to answer questions about rare diseases and provides information about ORDR-sponsored biomedical research, scientific conferences, and rare and genetic diseases; also serves as a portal to information on major topics of interest to the rare diseases community.
National Organization for Rare Disorders
Federation
of voluntary health organizations dedicated to helping people with rare
"orphan" diseases and assisting the organizations that serve them. NORD
is committed to the identification, treatment, and cure of rare
disorders through programs of education, advocacy, research, and
service.
Tay-Sachs
National Tay-Sachs and Allied Diseases Association
Offering
support and programs geared to families affected by Tay-Sachs Disease
and more than 40 other fatal degenerative genetic disorders.
Tuberous Sclerosis
The Rothberg Institute for Childhood Diseases
Nonprofit organization dedicated to finding a cure for Tuberous Sclerosis Complex.
