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2022 FAIR Toolkit: Family Planning and Financial Considerations
Choosing to start or expand a family is one of the most significant decisions couples will make […]
Read more2022 FAIR Toolkit: Understanding Employment Benefits and Navigating Career Opportunities
Being able to work means so much more than the money we earn. Having a career can […]
Read more2022 FAIR Toolkit: Understanding and Navigating Medicare
GG-FA-Toolkit-Navigating-Medicaid_Digital_Final In addition to the physical, mental, and emotional hardships of living with a rare disease, the […]
Read more2022 FAIR Toolkit: Caring for Yourself and Your Children
Living with a rare disease is like running uphill over one hurdle after another. Fatigue and pain […]
Read more2022 Rare Research Roadmap
This roadmap is designed to put you in the driver’s seat and in control of how to move your research forward. Whether you are an individual, advocate, or organization, this roadmap was created to help you better understand some of the potential routes to treatment and some of the key concepts that are part of these processes.
Read moreGene-Based Diagnosis 101: How to Successfully Navigate the Diagnostic Journey
As scientific innovation in genomic medicine continues to provide more hope for therapeutic options, there is a […]
Read moreUnderstanding Access to Newborn Screening and Genetic Tests
Introduction The Rationale for Newborn Screening Newborn screening is one of the most effective core […]
Read moreDiagnosis or No Diagnosis: What’s Next After Genetic Testing
If you are seeking a diagnosis, genetic tests along with a physical exam, medical history, and other […]
Read moreGenetic Testing: Getting To a Diagnosis
Technology has advanced tremendously over the last decade. The costs of tests are decreasing. Genetic testing […]
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