Rare Disease Support

Searching for Rare Disease Support information? Find all needed info by using official links provided below.


Support for Patients and Families - Rare Disease

    https://rarediseases.info.nih.gov/guides/pages/120/support-for-patients-and-families
    Support for Patients and Families Individuals and families affected by rare medical conditions might look to nonprofit support and advocacy groups for different reasons. Some may want to find other people who understand how having the condition affects their lives.

Support NORD and Help Rare Disease Patients and Families ...

    https://rarediseases.org/for-patients-and-families/take-action/support/
    As a nonprofit, NORD relies on the generosity of our supporters. We truly appreciate your support and commitment to working with us to help rare disease patients and families.

FDA Harnesses Technology and Collaboration to Support Rare ...

    https://www.fda.gov/news-events/fda-voices-perspectives-fda-leadership-and-experts/fda-harnesses-technology-and-collaboration-support-rare-disease-product-development
    FDA Harnesses Technology and Collaboration to Support Rare Disease Product Development. Announcing an Orphan Drug Technology Modernization effort and the 2020 FDA Rare Disease …

Support Recordati Rare Diseases

    https://www.recordatirarediseases.com/us/support
    A: A rare disease, also known as an orphan disease, affects a small percentage of the population or fewer than 200,000 Americans. People living with rare diseases face a number of challenges, including long delays in diagnosis, limited public and/or physician awareness, lack of treatment options, and resulting social and financial burdens.

Rare disease patient support - Pharmaceutical Commerce

    https://pharmaceuticalcommerce.com/brand-marketing-communications/rare-disease-patient-support/
    Aug 06, 2018 · Diagnosing and treating a rare disease is difficult on a good day. Length of time to diagnosis (often more than five years), lack of therapies (there are effective therapies for less than five percent of 7,000 known rare diseases) and small patient populations all lead to significant challenges for the healthcare industry in rare disease management and support of these patient populations.

Find a Patient Organization - NORD (National Organization ...

    https://rarediseases.org/for-patients-and-families/connect-others/find-patient-organization/
    Please note that NORD provides this information for the benefit of the rare disease community. NORD is not a medical provider or health care facility and thus can neither diagnose any disease or disorder nor endorse or recommend any specific medical treatments.

For Rare Disease Patients and Families - NORD (National ...

    https://rarediseases.org/for-patients-and-families/
    Please note that NORD provides this information for the benefit of the rare disease community. NORD is not a medical provider or health care facility and thus can neither diagnose any disease or disorder nor endorse or recommend any specific medical treatments.

Rare Disease and Genetic Conditions Support Group & Forum ...

    https://www.inspire.com/groups/rare-disease-and-genetic-conditions/
    The Genetic Alliance Rare Disease & Genetic Conditions Support Community connects patients, families, friends and caregivers for support and inspiration. This community is sponsored by Genetic Alliance, an Inspire trusted partner. More about this community

Home - NORD (National Organization for Rare Disorders)

    https://rarediseases.org/
    Students for Rare Featured Student: Allison Herrity “About two years ago, I was diagnosed with my rare disease, and I was looking for a way to get involved with some sort of community after such a long diagnostic odyssey. I also have a sister with a rare disease, and her journey has pushed me toward advocacy as well. ” Read more >

Home - Rare Disease UK

    https://www.raredisease.org.uk/
    Our Work. We believe that everyone living with a rare disease should be able to receive high quality services, treatment and support. We work with health departments across the UK to implement the UK Strategy for Rare Diseases to ensure that patients and families living with rare conditions have equitable access to high quality services, treatment and support.



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