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…
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…
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…
Rare Insight: Building a Stronger Financial Future
Thank you for including us in your story! This Global Genes RARE Insight offers practical steps, tips, suggestions, and resources for: Building a Stronger Financial Future. This Insight is one in a series we are creating in response to the need for more information about adjacent issues that affect the medical needs o…
Finding your Fundraising Strategy
# **Under the Big Top!: Fundraising Overview** Like a world-class circus, successful fundraising includes a variety of talent, magic, and tightrope risk taking. And even if you are included in the estimated 12 percent of U.S. adults who have coulrophobia (a fear of clowns), you can still enjoy being the ringmaster in…
Navigating Health Insurance
Thank you for including us on your journey! Most likely you have a need for this: Navigating Health Insurance because you or a loved one has a rare disease. As you prepare to use the tools in this kit, we want you to know that you are not alone. We are in this together. It is our hope that the personal stories, resour…
Financial Advocacy in Rare Diseases: Landscape Assessment
![][1]Financial distress is a multidimensional concept derived from health disparities research that refers to lack of access to material, social, and cultural resources that support the individual, household, and wider collective experience and negotiation of healthcare. Other similar terms that have gained traction…
Financial Advocacy in RARE: Navigating the U.S. Health System for Young Adults
# **Introduction - Preparing for Transition** The transition to adulthood is a process and the experience of becoming an adult is different for everyone whether or not you have a rare disease. But if you have a rare disease, there are some extra challenges to think about, including navigating the healthcare system. W…
