Download our Resource Guide for Patients Living with Rare Diseases to find essential information and support to understand your rare disease diagnosis, connect with advocacy organizations, and explore treatment options.
Key Information and Resources
- Understanding Your Diagnosis and Health System Navigation
- Get information from reliable sources, often advocacy organizations specific to the disease/condition.
- Contact the Genetic and Rare Disease Information Center (GARD) for help finding information, navigating diagnosis, and learning about disease experts. Meet with a genetic counselor to learn more about the disease.
- Connect with the rare disease community and learn from community advocates.
- Advocate for yourself or your loved one, keep a notebook of questions for your care provider, and check National Organization for Rare Disorders (NORD’s) resource on Medicaid Financial Eligibility.
- Rare Disease Community Resources
- Learn from advocates like Effie Parks, host of the “Once Upon a Gene” podcast, and Sierra Phillips, co-founder of Librarey, a free rare disease and disability resource database.
- Exploring Clinical Trials
- Start your search with advocacy groups or utilize central databases.
- Use ClinicalTrials.gov for a general search hub and NORD’s resources like Find A Rare Disease Organization and Find Clinical Trials & Research Studies.
- Find answers to questions about side effects, receiving treatment from other physicians, time commitment, and the use of placebos.
- Diversity, Equity, and Inclusion (DEI)
Embracing diversity and inclusion in rare disease clinical trials is essential for advancing medical research and improving patient outcomes. Check out helpful resources like RDDC and the RARE-X resource on DEI.
Informed Decisions, Brighter Future: Get the Guide
UBC’s Glynis Daniel-Archibald, MD, MBA, Marita Lynott, and Lashawnya Tanks, provide options and resources to help navigate a rare disease diagnosis in this guide. By leveraging the wealth of information and support available we can make strides towards better health and a brighter future.
