Rare diseases often get the short end of the stick when it comes to accessible information and resources. That’s why we’re pleased to offer this index of rare disease resources for patients, caregivers, and health care professionals.
National Organization for Rare Diseases (NORD)
NORD is a non-profit organization established in 1983 to improve the lives of individuals and families affected by rare diseases. It provides programs of advocacy, education (for patients and medical professionals), and referrals to resources.
NORD provides Patient Assistance Programs to help patients gain access to needed treatments. These programs, which vary from time to time, are listed on the NORD website (www.rarediseases.org).
NORD administers research grants to encourage the study of rare diseases. These grants are funded largely by patients, their families, and patient organizations. View funding opportunities on the NORD website.
Information and Resources available through NORD:
- Rare Disease Information: http://rarediseases.org/for-patients-and-families/information-resources/rare-disease-information/
- Resources and FAQ’s: http://rarediseases.org/for-patients-and-families/information-resources/resources-faqs/
- State Health Insurance Information: http://rarediseases.org/for-patients-and-families/information-resources/state-health-insurance-information/
- Information for Your Doctor: http://rarediseases.org/for-patients-and-families/information-resources/information-doctor/
- News About Clinical Trial Patient Recruitment: http://rarediseases.org/for-patients-and-families/information-resources/news-patient-recruitment/
Help to Access Medications:
- Patients Assistance Programs: http://rarediseases.org/for-patients-and-families/help-access-medications/patient-assistance-programs/
- Other Financial Assistance: http://rarediseases.org/for-patients-and-families/help-access-medications/financial-assistance/
Connecting with Others:
- Find a Patient Organization: http://rarediseases.org/for-patients-and-families/connect-others/find-patient-organization/
- Find a Patient Meeting: http://rarediseases.org/for-patients-and-families/connect-others/find-a-patient-meeting/
- Rare Disease Day: http://rarediseases.org/for-patients-and-families/connect-others/rare-disease-day/
- Start a Patient Organization: http://rarediseases.org/for-patients-and-families/connect-others/start-patient-organization/
- Attend Events: http://rarediseases.org/for-patients-and-families/take-action/attend-events/
- Advocate: http://rarediseases.org/for-patients-and-families/take-action/advocate/
NORD Guides for Physicians:
- About the Guides: http://nordphysicianguides.org/about-the-guides/
- Index of Guides: http://nordphysicianguides.org/index-of-guides/
- Support the Guides: http://nordphysicianguides.org/support-the-guides/
- For Clinicians: http://nordphysicianguides.org/for-clinicians/
NORD Also Offers Links to Information For:
- Rare Disorder-Disease Patient Organizations: http://rarediseases.org/for-patient-organizations/
- The Healthcare Industry: http://rarediseases.org/for-industry/
- Clinicians and Researchers: http://rarediseases.org/for-clinicians-and-researchers/
- Advocate: http://rarediseases.org/advocate/
- Educational Initiatives: http://rarediseases.org/get-involved/educate/educational-initiatives/
- Raise Awareness: http://rarediseases.org/get-involved/educate/raise-awareness/
- Identify Rare Disease Experts: http://rarediseases.org/get-involved/educate/identify-rare-disease-experts/
NIH Genetic and Rare Disease Information Center
The Genetic and Rare Diseases (GARD) Information Center is a program of the National Center for Advancing Translational Sciences (www.ncats.nih.gov) and is funded by two parts of the National Institutes of Health (NIH): NCATS and the National Human Genome Research Institute (NHGRI). The GARD Information Center provides the public with access to current, reliable, and easy-to-understand information about rare or genetic diseases in English or Spanish.
- Diseases: https://rarediseases.info.nih.gov/
- Rare Disease Resources: https://rarediseases.info.nih.gov/resources/2/rare-diseases-resources
- Research: https://rarediseases.info.nih.gov/research
- News and Events: https://rarediseases.info.nih.gov/news-and-events
- About GARD: https://rarediseases.info.nih.gov/about-gard/pages/23/about-gard
- Basic Information: https://rarediseases.info.nih.gov/resources/2/rare-diseases-resources#category4
- Rare Disease Network: https://rarediseases.info.nih.gov/resources/2/rare-diseases- -resources#category6
The NIH Undiagnosed Disease Network (UDN) is a research study funded by the National Institutes of Health Common Fund and made up of clinical and research centers across the United States working to improve diagnosis and care of patients with undiagnosed diseases.
- Home: https://undiagnosed.hms.harvard.edu/
- FAQ’s: https://undiagnosed.hms.harvard.edu/faq/
- How to Apply: https://undiagnosed.hms.harvard.edu/apply/
- Tips For The Undiagnosed: https://rarediseases.info.nih.gov/resources/pages/24/tips-for-the-undiagnosed
Rare Disease Advocacy Groups
Global Genes is one of the leading rare disease patient advocacy organizations in the world. The non-profit organization promotes the needs of the rare disease community under a unifying symbol of hope — the Blue Denim Genes Ribbon.
What began as a grassroots movement in 2009, with just a few rare disease parent advocates and foundations, has since grown to over 500 global organizations. RARE Toolkits provide individuals with usable information on a variety of topics related to living with and/or advocating for rare disease patients.
The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit dedicated to accelerating biotech innovation for rare disease treatments through science-driven public policy. We can do more with the science we already have and bring life-saving treatments to millions of people suffering from rare diseases.
The Rare Disease Legislative Advocates is a program of the EveryLife Foundation for Rare Diseases designed to support the advocacy of all rare disease patients and organizations, by growing the patient advocacy community and working collectively, to ensure that rare disease patients are heard in state and federal government.
The National Patient Advocate Foundation is the advocacy affiliate of the Patient Advocate Foundation and represents patients nationwide struggling with chronic, debilitating or life threatening illness.