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Support for Patients and Families

Support for Patients and Families

Explore this section for support and advocacy organizations that can help you share your story, connect with others, find knowledgeable healthcare professionals, locate financial assistance, or get involved in research and awareness activities.

Patient Advocacy Groups in the United States

List of Advocacy Organizations for Rare Diseases (PDF)

The Genetic and Rare Diseases (GARD) Information Center has compiled a list of advocacy organizations that support rare diseases.

Contact Information for Rare Disease Advocacy Organizations (Excel)

The Genetic and Rare Diseases (GARD) Information Center has collected contact information for many advocacy organizations that support rare diseases.

National Organization for Rare Disorders (NORD)

A federation of voluntary health organizations helping people with rare diseases; includes a database of patient support and health-related organizations.

Genetic Alliance

Provides information and assistance to increase the capacity of genetic advocacy organizations through networking and education and assists individuals with genetic conditions.

Global Genes Project

The Global Genes Project mission is centered on increasing rare disease awareness, public and physician education, building community through social media and supporting research initiatives to find treatments and cures for rare and genetic diseases.

Contact a Family

Rare disorder team brings together groups, families, and individuals of all ages who are affected by rare disorders, including those with late-onset conditions; Directory of Specific Conditions and Rare Disorders provides descriptions of hundreds of diseases and information on inheritance patterns, prenatal diagnosis, and related organizations; supports an international Web-based confidential linking service for individuals and families with rare disorders.

DIRLINE

DIRLINE (Directory of Information Resources Online) is the National Library of Medicine's online database containing more than 8,000 records, including location and descriptive information about a wide variety of information resources including organizations, research resources, projects, and databases concerned with health and biomedicine.

Health Hotlines

A database of toll-free numbers from the National Library of Medicine (NLM) with descriptions of more than 14,000 biomedical information resources, including organizations, databases, research resources, etc.

In Need of Diagnosis, Inc. (INoD)

Provides help and support to individuals with undiagnosed conditions.

Madisons Foundation

Provides information about rare diseases and connects parents whose children have the same rare disease.

March of Dimes

March of Dimes tiene como misión el mejorar la salud de los bebés al prevenir los defectos de nacimiento, el nacimiento prematuro y la mortalidad infantil. March of Dimes lleva a cabo su misión a través de programas de investigación, servicios comunitarios, educación y apoyo para la salud de los bebés.

Parent Technical Assistance Center Network

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.

RareShare

An online social hub dedicated to patients, families and healthcare professionals affected by rare medical disorders.

Syndromes Without A Name- USA (SWAN-USA)

Offers support, information, and advice to families of children living with a undiagnosed syndrome.

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Patient Advocacy Groups Outside the United States

Association of Genetic Support of Australasia (AGSA) Inc.

Provides support and information for individuals and families affected by a genetic condition in Australia and other countries in the vicinity.

Australasian Genetic Alliance

The Australasian Genetic Alliance (AGA) is a network of peak organizations that represent genetic support groups, individuals, and families in the Australasian region who are living with a genetic condition or a genetic predisposition. For information on genetic support groups and services in your state, contact the relevant state Alliance member.

Bulgarian Association for Promotion of Education and Science (BAPES)

The Information Centre for Rare Diseases and Orphan Drugs is a project and activity of the Bulgarian Association for Promotion of Education and Science (BAPES), whose objectives are to stimulate scientific research, to stimulate the development of technologies and their application in practice, and to support all areas of education and science in medicine.

Canadian Organization for Rare Disorders (CORD)

Canada’s national network for organizations representing patients with rare disorders works with governments, researchers, clinicians, and industry to promote research, diagnosis, treatment, and services for all rare disorders in Canada.

European Organization for Rare Disorders (EURORDIS)

A patient-driven alliance of patient organizations and individuals active in the field of rare diseases building a pan-European community of patient organizations and people living with rare diseases to fight against the impact of rare diseases on their lives.

Italian National Center for Rare Diseases

The Web site of the Italian Health Ministry's Program for Rare Diseases (in Italian); also lists links to other rare diseases Web sites.

Korean Organization for Rare Diseases

For information contact the Korean Organization for Rare Diseases.

New Zealand Organisation for Rare Disorders (NZORD)

Provides New Zealand's central starting point for information about rare diseases.

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Financial Aid

National Human Genome Research Institute

A list of resources that may help in finding information on financial aid for medical treatment.

National Organization for Rare Disorders

A list of links to financial and medication assistance resources that may be useful to individuals and families affected by rare diseases.

SSA Compassionate Allowances Initiative

The Social Security Administration has a Compassionate Allowances Initiative, which speeds up the processing of disability claims for applicants with certain medical conditions that cause severe disability.

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Travel and Lodging Assistance

Angel Flight at NIH

Patient assistance, referral, and arrangements for all forms of ambulatory outpatient charitable or charitably assisted travel to and from distant specialized medical evaluation, diagnosis, and treatment; serves clinical trial patients. Angel Flight Newsletter, Spring 2012, 9(1).

The Children’s Inn at NIH

A private, nonprofit, family-centered residence for pediatric outpatients and their families at the National Institutes of Health.

Edmond J. Safra Family Lodge at NIH

Offers a home-like place of respite for families and loved ones of adult patients who are receiving care at the NIH Clinical Center.

Air Ambulance Anywhere

Provides fixed-wing air ambulance transport services for patients, family members, and providers of medical care; delivers bed-to-bed service, specialized medical care during transport, and other necessary incidentals for any of three levels of medical care—basic life support, advanced life support, and critical care—on domestic and international flights.

Air Ambulance Specialists, Inc.

Provides fixed-wing air ambulance transport services for patients, family members, and providers of medical care; delivers bed-to-bed service, specialized medical care during transport, and other necessary incidentals for any of three levels of medical care—basic life support, advanced life support, and critical care—on domestic and international flights.

Air Charity Network (ACN)

Provides services to people in need access to free air transportation to specialized health care facilities in case of family, community, or national crisis.

Air Compassion America

A nonprofit patient advocacy/assistance organization that helps locate and coordinate bed-to-bed air ambulance services and/or airline medical escort services and assists patients' families in saving an average of 40% off commercial air ambulance costs.

Air Transport Services/Ambulances

A listing of commercial national and international ambulance services.

American Jets, Inc: Air Ambulance

Airborne intensive care ambulance unit that responds to emergencies around the globe, 24 hours a day, 7 days a week.

Angel Flight Veteran

Arranges flights for veterans and active-duty military personnel and their families in need of compassionate medical air transportation.

Corporate Angel Network (CAN)

Arranges free travel on corporate jets for cancer patients, bone marrow donors, and bone marrow recipients.

Joe's House

An accommodation expert to help patients with their travel needs with various types of lodging throughout the United States.

Mercy Medical Airlift

Provides services to those in need of air medical transportation.

National Association of Hospital Hospitality Houses

Provides lodging and other supportive services to patients and their families when they are confronted with medical emergencies.

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Disability Resources

Family Center on Technology and Disability

The Family Center on Technology and Disability is a resource designed to support organizations and programs that work with families of children and youth with disabilities.

National Dissemination Center for Children with Disabilities (NICHCY)

Education-focused information about disabilities and disability-related issues to benefit children and youth for families, educators, administrators, and the public.

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Evaluating Health Information

Finding Reliable Health Information Online

The National Human Genome Research Institute provides a factsheet on how to find accurate and reliable information on genetic and rare diseases from online sources.

Agency for Healthcare Research and Quality

Tips for finding evidence-based information after receiving a diagnosis.

Trust It or Trash It?

This tool is designed to help you think critically about the quality of health information (including websites, handouts, booklets, etc.).

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