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Helpful Resources and Links
The following are some general resources for help for families with seriously ill, injured, or disabled children. If you are in need of financial or other assistance, consider contacting:
  • Disease-specific organizations such as the American Cancer Society, which may be able to provide direct support or lead to resources that can help.
  • Your state representative's office, for direction or information on any available state support or resources.
  • Local Kiwanis or Shriner's group, both national organizations that focus on children's needs.
  • The nearest United Way office, as they are the umbrella organization for the nonprofit sector.
  • Local churches, synagogues, or other places of worship, which often have discretionary funds to help people in crisis in their community, even if you are not affiliated with a particular religious group.
  • Your NBC, CBS, ABC, or Fox affiliate's consumer affairs reporter: Often stories about the financial hardships brought by serious illness/injury are put on air, bringing a great deal of community support. Put pride aside; no one can get through catastrophic illness alone.

We have compiled a list of resources for families dealing with illness or disabilities, which can be viewed here.

American Red Cross
The American Red Cross offers compassionate services in disaster relief; community services that help the needy; support and comfort for military members and their families; the collection, processing, and distribution of lifesaving blood and blood products; educational programs that promote health and safety; and international relief and development programs. Some four million people give bloodthe gift of lifethrough the Red Cross, making it the largest supplier of blood and blood products in the United States.
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.

Federal Resources

Accessability

United States Access Board
An independent federal agency whose primary mission is accessibility for people with disabilities.

Disabilities


National Dissemination Center for Children with Disabilities
National information center that provides information on disabilities and disability related issues, focusing on children and youth.

Family Health


National Institute of Child Health and Human Development
Conducts and supports research on topics related to the health of children, adults, families, and populations.

Rehabilitation

AbleData
Objective information about assistive technology products and rehabilitation equipment available from domestic and international sources. AbleData does not sell any products, but offers a searchable database of 19,000 assistive technology products. Site maintained for the National Institute of Disability Rehabilitation Research of the United States.

National Rehabilitation Information Center
Online gateway to an abundance of disability- and rehabilitation-oriented information organized in a variety of formats designed to make it easy for users to find and use.

Visual Impairments

National Eye Institute
NEI research leads to sight-saving treatments, reduces visual impairment and blindness, and improves the quality of life for people of all ages. NEI-supported research has advanced our knowledge of how the visual system functions in health and disease.

General Help

Brave Kids
Special needs children resources directory children with chronic life-threatening illnesses or disabilities resources from Brave Kids.

Children's Advocacy Project (CAP4Kids)
Helps bridge the gap between social service agencies in a city and families that need help.

Children's Hospice International
Ensuring medical, psychological, social, spiritual support to all children with life-threatening conditions and their families from the time of diagnosis.

Compassionate Friends
A national self-help support organization that assists families in the positive resolution of grief following the death of a child and provides information to help others be supportive.

Easter Seals
Non-profit, community-based health agency dedicated to helping children and adults with disabilities attain greater independence.

Family Voices
Aims to achieve family-centered care for all children with special health care needs and/or disabilities.

Friends' Health Connection

Links individuals with similar health challenges for mutual support and provides public access to exceptional health, wellness and motivational programs.

Make-A-Wish Foundation of America
Grants the wishes of children with life-threatening medical conditions to enrich the human experience with hope, strength, and joy.

Mary Kate's Legacy Foundation
Provides assistance to families of special needs children in Bucks and Montgomery Counties, Pennsylvania.

National Health Council
Brings together all segments of the healthcare community to provide a united voice for people with chronic diseases and disabilities.

National Patient Travel Center
Resource for patients who seek information about free air transportation to distant medical facilities.

Partnership for Prescription Assistance
Helps qualifying patients without prescription drug coverage get the medicines they need for free or nearly free.

Patient AirLift Services
Provides free air transportation based on need to individuals requiring medical care and for other humanitarian purposes.

Sibling Support Project
Dedicated to the life-long concerns of brothers and sisters of people who have special health, developmental, or mental health concerns.

The Arc of the United States
Devoted to promoting and improving supports and services for all people with intellectual and developmental disabilities.

United Way
National network of nearly 1300 local organizations that work to advance the common good by focusing on education, income, and health.

Your ReSource
Accepts donations of used medical equipment such as wheelchairs, walkers, and hospital beds and distributes them to people in the community.