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…
Understanding Access to Newborn Screening and Genetic Tests
![][1] **Introduction** **The Rationale for Newborn Screening** Newborn screening is one of the most effective core public health programs in the United States, having existed since the 1960s based on a blueprint developed by the American Academy of Pediatrics. Newborn screening involves administering tests to all…
Fundraising Ideas Anyone Can Try
Fundraising for research, support services and other resources can be challenging to organizations regardless of size. A panel of advocacy organization leaders will share the fundraising tactics that work for them as well as what they learned from efforts that failed to gain traction. Learn how to motivate and activat…
How to Access and Maintain Social Security Benefits
**Introduction** **What Is Social Security?** Social Security is a federal program that provides retirement benefits and Medicare health insurance to senior citizens. However, Social Security is not just for elderly Americans. Social Security Disability Insurance (SSDI) provides a monthly benefit to adults with a di…
RARE Patient Advocacy Summit
_**Please join us for our**_ 3rd Annual “RARE Patient Advocacy Summit_”_ held on **September 11-12, 2014** at the Hyatt Regency in Huntington Beach, California. _**Empowering Patient Advocates to Become Successful ****Activists**_ [Download Agenda][1][ (PDF) ][2][Download Speaker Bios][3] (PDF) Download PDF slides: [D…
Global Genes LIVE!: Mitigating Familial Financial Toxicity Through Planning
Join us for this discussion to learn about patient financial literacy and resources to support shared decision making. Financial experts will also discuss issues and barriers related to financial well-being, patient outcomes and quality of life. Featuring Barby Ingle, Alan Richardson, and Christina Hartman.
