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Showing articles from Finances tag

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…

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…

Understanding and Navigating Medicaid

**Introduction** **What is Medicaid?** Medicaid is a joint federal and state health insurance program that helps people with low incomes, people with disabilities, and people receiving Supplemental Security Income (SSI) pay for health care. It is the largest health insurer in the United States and provides health co…

Partnering with State and Federal Representatives

**Introduction** **What is Advocacy?** Anyone can be an advocate. Advocates are people who share their stories about how a system is affecting them personally and urge decision makers to take action. Your representatives in state government or in the U.S. Congress can vote to support legislation that expedites diagn…

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…

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.

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…

RARE Webinar: Transition of Care: Planning for Care for Children with a Rare Disease

![][1] As caregivers age, preparing for your loved one’s future can be daunting. It may be difficult for both you and the loved one in your care as you both transition into new roles and new chapters in your life. How do you plan for care for your adult child living with a rare disease–both physically and financially…

Global Genes LIVE!: How to Become a Proactive Financial Advocate for Young Adults

Join our panelists as they discuss the determinants of financial well-being for young adults with rare diseases. Learn to identify patient and clinical financial literacy and education gaps, and explore financial advocacy and literacy resources available for all rare disease organizations wanting to educate their pati…

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