Rare Diseases Information Toolkit

Provides grants to states and territories in order to help caregivers care for older adults in their homes for as long as possible.

Provides education, peer support, and resources to family caregivers across the country.

Family-friendly information and research-based materials on key topics for Parent Centers.

Use this search tool to connect to services for older adults and their families.

Provides services to caregivers of adults with physical and cognitive impairments, such as Parkinson’s, stroke, Alzheimer’s and other types of dementia.

Provides support for families and friends of children and youth with special health care needs (CYSHCN) and disabilities.

A tool for organizing groups that can help friends and family.

A page on caregiver health, including links to more resources.

Supports a network of more than 80 state and local caregiving coalitions through advocacy and research.

A directory of caregiving organizations.

This site helps families locate respite and crisis care services in their communities.

Raises awareness about transitions of care among healthcare professionals, government leaders, patients, and caregivers in order to increase the quality of care, reduce medication errors and enhance clinical outcomes.

A resource for healthy aging and seniors in Virginia. Includes health, housing, and financial information and tips.

Offers clinical services to caregivers of eligible and covered Veterans enrolled in the VA health care system.

Helpful information about caring for others, including using medical devices, preparing food safely, and other concerns.

Provides easy-to-use guides health care providers and family caregivers that focus on transitions between hospitals, rehabilitation facilities, nursing homes, and home.

The 988 Lifeline provides 24/7, free and confidential support for people in distress, prevention and crisis resources for you or your loved ones.

Text HOME to 741741 to connect with a volunteer crisis counselor.

Use this tool to search for helplines to call for specific information.

Give an Hour provides mental health services and resources for individuals and communities.

A guide to managing depression and anxiety related to having a rare disease.

Mental and emotional resources available from each state in the U.S.

This page lists various hotlines for mental health crises.

This page outlines symptoms of depression and anxiety that children and teenagers may experience as a result of having a rare disease.

Use this map to find local resources for the National Alliance on Mental Illness.

This page offers ways of getting immediate help or finding a health care provider.

Use this search tool to find substance abuse rehabilitation and help with mental health.

Veterans in crisis can use this hotline for help (you do not have to be a veteran to call this number).

Alphabetical directory of a variety of support groups for specific rare diseases.

An organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments and cures.

A guide to help young adults navigate healthcare.

Get in contact with GARD to learn about rare diseases.

RARE Concierge patient service guides are here to help you navigate the complicated world of rare and undiagnosed diseases.

This page provides tips and resources for those wanting to share their rare disease story.

Rare disease and genetic disorders support group and discussion community.

Get the health answers you need from people who live it every day in this community forum.

This page provides various fact sheets and toolkits for guardians of children who have experienced traumatic stress.

Here you can share your story (or a family member's story) about living with a rare disease.

RareConnect was retired on December 5, 2023. Users can read posts and comments made before December 5, 2023 but users can not create new posts.

A rare disease community that allows the direct exchange of information among patients, families, research organizations, and health care professionals.