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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 - Allies in Rare Disease

Global Genes is a leading rare disease patient advocacy organization whose mission is simple: to eliminate the challenges of rare disease. They do this through developing educational resources, providing critical connections, and equipping advocates to become successful activists.

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.

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.

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

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.

Genetic Alliance Australia

A network for rare diseases that do not have their own support group. They will try to connect people with others who have the same rare disease.

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.

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

Government Programs

Information on Medicare, Medicaid, Disability and other government programs that provide financial assistance for healthcare costs.

Non-Profit Organizations

Many non-profit organizations have information on disease-specific financial assistance programs, whereas others may provide more general information on free or reduced-cost medical care. These organizations may also provide information for those needing assistance with medication or travel.

Help With the Cost of Prescriptions

GARD has developed a list of organizations with information for those needing help paying for medications.

Healthcare For Children

Many children and teens qualify for free or low-cost health and dental coverage. GARD has a list of resources that are especially designed to help with the cost of healthcare for children.

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

National Patient Travel Center

Provides information about all forms of charitable, long-distance medically-related transportation and provides referrals to all appropriate sources of help available in the national charitable medical transportation network.

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 Network

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.

AMR Air Ambulance

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.

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 Angels

Provides services to those in need of 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.

Miracle Flights

Provides free medical flights to specialized care and second opinions. 

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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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