American College of Medical Genetics and Genomics – ACT Sheets and Algorithms
https://www.acmg.net/ACMG/Medical-Genetics-Practice-Resources/ACT_Sheets_and_Algorithms/
A resource for health care providers looking for information on genetic conditions to inform clinical decision making.
American College of Medical Genetics and Genomics- Find a Genetic Clinic
https://clinics.acmg.net/site/index
Allows individuals to search for genetics clinics across the United States. The directory contains the locations of genetics clinics that have requested to be listed.
National Organization for Rare Disorders (NORD)
https://rarediseases.org/
Provides resources to help with getting a diagnosis, locating a specialist, finding a clinical trial or research study, paying medical bills, and affording prescription drugs. Also have a data base to help you locate Rare Disease Patient Organizations.
Genetic Alliance
https://geneticalliance.org/
Genetic Alliance is a leader in deploying high tech and high touch programs for individuals, families, and communities to transform health systems by being responsive to the real needs of people in their quest for health.
Resources available on their website include the following:
- Disease InfoSearch
https://geneticalliance.org/disease-infosearch
Offers a consumer-facing directory of more than 10,000 diseases, with up-to-date information about current opportunities for research and support curated by advocacy organizations. Condition pages gather links to quality disease information across the Internet and pairs them with information on support groups and resources. Viewers can also find information ranging from scientific articles to active clinical trials. - WikiAdvocacy
https://wikiadvocacy.org/
An online community offering a place where advocates share knowledge and experience about advocacy groups in a real time, interactive manner. This guide is a resource for a range of organizations, from the very small kitchen-table group to an established organization looking to expand or refine its mission. Through stories, how-tos, pointers, and exercises, they help organizations focus on their goals so they can map out a strategy to meet them. - Expecting Health
https://expectinghealth.org/
Expecting Health shares science-based and policy-informed information that reflects the lived experiences of individuals and their families. They do this through the power of relationships; convening the top experts; working with key leaders in health; and engaging with families and communities at the center of the conversation.
NIH Genetic and Rare Diseases Information Center (GARD)
https://rarediseases.info.nih.gov/
The Genetic and Rare Diseases (GARD) Information Center is a public health resource aiming to support people living with a rare disease and their caregivers by providing access to easy-to-understand information that is free and reliable.
Genetics Policy Hub –
https://geneticspolicy.nccrcg.org/
The Genetics Policy Hub has information on proposed legislation and regulation related to genetics at the state and federal level, Medicaid coverage of genetic services, as well as specific policy topics.
Baby’s First Test
https://www.babysfirsttest.org/
Baby’s First Test is the nation’s newborn screening education resource center for families and health professionals. They provide up-to-date information, support, and services for families and education, materials, and resources about newborn screening at the local, state, and national levels.
NIH National Human Genome Research Institute
https://www.genome.gov/
NHGRI’s mission is to accelerate scientific and medical breakthroughs that improve human health. They do this by driving cutting-edge research, developing new technologies, and studying the impact of genomics on society. Site offerings include educational resources, policy issues in genomics, as well as information on the Human Genome Project.
The Catalyst Center
http://catalystctr.org/
A national center dedicated to improving health care coverage and financing for Children and Youth with Special Health Care Needs (CYSHCN). The center works to promote strategies to cover more kids, close benefit gaps, pay for additional services, and build capacity. Includes resources for families and professionals.
Family to Family Health Information Centers
https://familyvoices.org/felsc/whataref2fs/
Family-to-Family Health Information Centers (F2Fs) are family-led organizations that support families of children and youth with special health care needs (CYSHCN). Each F2F is staffed by families with first-hand experience of the challenges faced by CYSHCN and their families. F2Fs also help healthcare providers, state and federal agencies, and legislators understand and respond to the needs of CYSHCN and their families. There is a F2F in every state, the District of Columbia, 5 US territories, and three F2Fs serving American Indians and Alaska Natives.
Family Voices (National) –
https://familyvoices.org
Family Voices is a national family-led organization of families and friends of children and youth with special health care needs (CYSHCN) and disabilities. They connect a network of family organizations across the United States that provide support to families of CYSHCN.
National Coordinating Center for the Regional Genetics Networks
https://nccrcg.org/
The National Coordinating Center for the Regional Genetics Networks mission is to improve access to genetic services for underserved populations. They accomplish this mission through working with the seven Regional Genetics Networks (RGNs) and the National Genetics Education and Family Support Center (Family Center) and developing resources related to education (general genetics and genetics policy), workforce development, and raising awareness about public health genetics.
The seven Regional Genetics Networks and Family Center are listed below:
- New England Regional Genetics Network
https://nccrcg.org/nergn-2/
The mission of the New England Regional Genetics Network (NERGN) is to promote and improve health and social well-being of those with inherited conditions through collaborations among public health professionals, private health professionals, educators, consumers and advocates in Maine, New Hampshire, Vermont, Massachusetts, Rhode Island and Connecticut. - NYMAC Regional Genetics Network
https://nymacgenetics.org/
A network of family groups, health care providers, public health groups, and other partners working together toward a goal of making it easier for families to connect to the genetic services and information they need. The NYMAC region includes Delaware, District of Columbia, Maryland, New Jersey, New York, Pennsylvania, Puerto Rico, US Virgin Islands, Virginia, and West Virginia. - Southeast Regional Genetics Network (SERN)
https://southeastgenetics.org/
The goal of SERN is to improve health equity and health outcomes in individuals with genetic conditions; reduce morbidity and mortality caused by genetic conditions (including congenital and metabolic disorders); and improve the quality of coordinated and comprehensive genetic services to children and their families. The SERN region includes Alabama, Florida, Georgia, Louisiana, Mississippi, North Carolina, South Carolina, and Tennessee. - Midwest Genetics Network (MGN)
https://midwestgenetics.org/
MGN unites patients, families, geneticists, genetics professionals, primary care providers, payers, and public health experts from each of our seven states to improve equity in access to genetic services for medically underserved populations. The MGN region includes Illinois, Indiana, Kentucky, Michigan, Minnesota, Ohio, and Wisconsin. - Heartland Regional Genetics Network
https://www.heartlandcollaborative.org/
The Heartland Regional Genetics Network is focused on ensuring the best possible outcome for individuals with heritable disorders and optimizing the health of the population throughout the life cycle by improving understanding and awareness of genetics, expanding access to healthcare, and translating new findings to improve the quality of care within an eight-state region. The Heartland region includes Arkansas, Iowa, Kansas, Missouri, Nebraska, North Dakota, Oklahoma, and South Dakota. - Mountain States Regional Genetics Network
https://www.mountainstatesgenetics.org/
The MSRGN facilitates regional networking, encourage the involvement of diverse populations, and support activities that inform quality improvement and access for underserved populations in the clinical genetics health care delivery systems. The Mountain States region includes Arizona, Colorado, Montana, New Mexico, Nevada, Texas, Utah, and Wyoming. - Western States Regional Genetics Network
https://www.westernstatesgenetics.org/
The Western States Regional Genetics Network is a federally funded, multi-state project that seeks to increase access to genetic services and education for medically underserved populations. The Western States region includes Alaska, California, Guam, Hawaii, Idaho, Oregon, and Washington. - National Genetics Education and Family Support Center
https://nationalfamilycenter.org/
The National Genetics Education and Family Support Center (Family Center) works to increase access to genetic services by promoting and strengthening family engagement in the genetic health care delivery system. They offer information and resources for families so that learning about and receiving genetic services isn’t so overwhelming.