Undiagnosed Diseases Programs

The Undiagnosed Diseases Network (UDN) is a research study that is funded by the National Institutes of Health Common Fund. Its purpose is to bring together clinical and research experts from across the United States to solve the most challenging medical mysteries using advanced technologies.

UDN Website

DISCOVER Program: Our Goal Is To Develop Novel, Individualized Treatments For Patients. The DISCOVER Program team searches to provide an accurate clinical diagnosis, and will not stop once the diagnosis is made. Patients will also have the opportunity to continue care and enroll in cutting-edge research studies with the vision to move beyond your diagnosis and toward the development of innovative treatments.

DISCOVER Program Website

The UAB Undiagnosed Diseases Program seeks to meet the needs of patients with severe chronic medical conditions in whom a diagnosis has not been made despite extensive efforts by the referring physician.

UAB Undiagnosed Diseases Program Website

Other Organizations


American College of Medical Genetics and Genomics is committed to improving health through medical genetics.  

ACMG Website

Aware of Angels is a 501(c)3 Non-Profit Organization Raising awareness for children with genetic/chromosome disorders, raising funds for needed research, connecting families, and assisting those children who still need a diagnosis.

Aware of Angels Website

Cheyanna’s Champions 4 Children (CC4C) is a non-profit organization providing children with rare or undiagnosed conditions and their families in the Central Texas area with inspirational programs and resources to help meet the child’s medical needs not covered by insurance or other financial assistance. 

CC4C Website

EURORDIS is a non-governmental patient-driven alliance of patient organizations representing 624 rare disease patient organizations in 58 countries. They are the voice of 30 million people affected by rare diseases throughout Europe.


The Genetic Disease Foundation is a non-profit organization established in 1997 by patients and families affected by genetic disorders. The Foundation’s mission is to support research, education and the prevention of genetic diseases.

Genetic Disease Foundation Website

The Global Genes Project is one of the leading rare and genetic disease patient advocacy organizations in the world. The non-profit organization promotes the needs of the rare and genetic disease community under a unifying symbol of hope – the Blue Denim Genes Ribbon™.

Global Genes Project Website

Knowledge is power! Understanding your genetic inheritance is one of the most important things you can do to take charge of your health and that of your loved ones. If you're thinking of having children or have a family history of disease, genetic testing can provide vital information.

Genetic Disease Foundation Website

The Mission Massimo Foundation aims to exponentially accelerate the discovery of novel genetic variations responsible for childhood Leukodystrophies and to translate these findings into clinical treatments.

Mission Massimo Website

The National Organization for Rare Disorders (NORD) is a nonprofit organization committed to the identification, treatment, and cure of disorders through programs of education, research, and service.

N.O.R.D. Website

The National Society of Genetic Counselors is committed to promoting the professional interests of genetic counselors and provides a network for professional communication.

NSGC Website

RareConnect was created by EURORDIS (European Rare Disease Organisation) and NORD (National Organization for Rare Disorders) to provide a safe space where individuals and families affected by rare diseases can connect with each other, share vital experiences, and find helpful information and resources.

RareConnect's Website

Rare Genomics Institute is an international non-profit that provides access to cutting edge research technologies, physicians, and scientists across the globe. By providing an expert network and an online crowdfunding mechanism, RGI helps families pursue personalized research projects in diseases not otherwise studied. We bring together scientists who share our passion for helping rare disease patients and leverage the crowdfunding capabilities of the Internet to bring the hope of a cure to our patients.

R.G.I. Website

The San Diego Undiagnosed Family Support Group brings together families of undiagnosed children to learn, share, and support each other amidst their long journey in search of a diagnosis.

San Diego Undiagnosed Family Support Group Website

The Sergeant Sullivan Center, founded in memory of Sergeant Thomas Sullivan who died from illnesses brought about by exposure to toxic fumes in post 9/11 Iraq,  is determined to help support veterans who are suffering from undiagnosed post-deployment illnesses.

Sergeant Sullivan Center Website

Syndromes Without a Name (SWAN) is a nonprofit organization that advocates for children and young adults who have syndromes with no diagnosis.  The organization offers support, advice and information on the challenges that families face when there is no diagnosis.  They also advocate for changes in the medical community that will benefit undiagnosed individuals.

S.W.A.N. Website

Raise awareness for families with children afflicted with undiagnosed or rare diagnosed conditions.
Urge insurance companies to reimburse genome sequencing in clinical settings.
Network with researchers, insurance providers,and industry stakeholders to meet these families' needs.

R.U.N. Website

TinySuperheroes seeks to empower Extraordinary kids who exemplify strength and determination by overcoming illness and disability.

TinySuperheroes Website

U.R. Our Hope is a nonprofit organization that assists individuals and families on the journey to find a diagnosis, or helps them navigate the health care system with a rare diagnosis.

U.R. Our Hope Website

The Wilhelm Foundation is an organization founded by the parents of two undiagnosed children.  They seek to promote awareness and aid for children with undiagnosed illnesses.

W.F. Website

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