Understanding Career Opportunities and Employment Benefits
Being able to work means so much more than the money we earn. Having a career can give our lives a sense of purposeful accomplishment while providing countless opportunities to learn, grow, and develop fulfilling relationships. The employment benefits you receive, in addition to your salary, can also provide you and y…
Understanding and Navigating Medicare
In addition to the physical, mental, and emotional hardships of living with a rare disease, the costs can be astronomical. According to the National Economic Burden of Rare Disease Study,1 conducted by the EveryLife Foundation for Rare Diseases, the economic cost of 379![][1] rare diseases reached nearly $1 trillion …
Caring for Yourself and Your Children
Living with a rare disease is like running uphill over one hurdle after another. Fatigue and pain come with the territory. On top of that, there’s the extraordinary effort needed to manage your health, pay your bills, hold down a job, and face the problems and hassles of modern![][1] life. These energy-sapping challe…
Family Planning and Financial Considerations
Choosing to start or expand a family is one of the most significant decisions couples will make in their lives. It is a highly personal one th![][1]at may be influenced by a person’s religion, societal norms, a biological urge to have a child, or even a desire to fill your home and world with more children. The decis…
How A Genetic Counselor Can Help You
Since most rare diseases are caused by changes in your genes, genetic testing is often part of the journey. But understanding your options may be challenging. Partnering with a genetic counselor can help you make the best choice for you and your family. **What is a Genetic Counselor?** A genetic counselor is a h…
Participating In A Clinical Trial: A Step-by-Step Guide for Rare Disease Patients and Families
![][1]This guide aims to provide general information and guidance for anyone affected by a rare disease who is considering participating in a clinical. The journey of participating in a trial can be a long journey towards hope for many people. The process can be complex and people, even people with a scientific and m…
Gene-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 growing need for patients and families to understand how gene-based testing can contribute to an accurate and timely diagnosis. This series of toolkits, videos, and checklists share insights from rare advoc…
