Searching for Rare Disease Support information? Find all needed info by using official links provided below.
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.
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.
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 …
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.
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.
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.
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.
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
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 >
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.
How to find Rare Disease Support information?
Follow the instuctions below:
- Choose an official link provided above.
- Click on it.
- Find company email address & contact them via email
- Find company phone & make a call.
- Find company address & visit their office.
