Financial Advocacy RARE Patient Impact Grant

Global Genes is currently accepting grant applications for our 2022 Financial Advocacy in RARE Patient Impact Grant. This grant opportunity is for Global Advocacy Alliance members (formerly the Foundation Alliance) only and will fund research or the creation of educational resources and programs that help the community better understand and navigate the financial challenges associated with rare or undiagnosed conditions. This grant is open to US and international organizations.

Applications for the 2022 Financial Advocacy in RARE Patient Impact Grant have closed. Winners will be announced the week of June 20th, so check back for updates.

Background

Most individuals have limited exposure to financial and health insurance literacy education in school, college or through work. As a result, many rare disease patients and families find themselves ill-equipped to navigate the health insurance landscape, have conversations with providers about the costs associated with care, afford and transition to independent living, access or obtain financial assistance, stay up to date on tests and treatments, etc. This in turn causes financial hardship and prevents individuals from achieving financial well-being, which can greatly impact one’s care satisfaction, clinical outcomes and quality of life.

Financial literacy in healthcare means the ability to assess, understand, and use financial information which lead to good health and financial outcomes. Financial literacy allows for:

• Identify your needs and understand your treatment options
• Make sound healthcare decisions with available resources
• Manage healthcare expenses
• Pay medical bills

Financial well–being means having financial security and financial freedom of choice, in the present and in the future.

Our 2021 Financial Advocacy in Rare Disease Landscape Assessment and Financial Advocacy Toolkits reveal significant gaps in providing robust and accessible health and financial literacy education and support for patients and caregivers. 

Applying for the Grant

Falling under Global Genes’ larger Health Equity Initiative, the 2022 Financial Advocacy Patient Impact Grant program empowers patient advocacy organizations to educate their communities on tackling issues that impact financial well-being and financial literacy for patients. 

Through this grant program, it is expected that one component of the proposed project will address the cultural, socioeconomic (income, age, level of education, religion and occupation) and/or linguistic barriers and factors that contribute to the community’s limited access to and understanding of financial literacy and financial well-being. This can be done through research or development of tools, resources and programs that provide guidance and assistance to underserved and underrepresented rare disease patients and families as they encounter financially stressful situations that may impede access to diagnosis, therapy and disease management.

For more information on this grant opportunity, please see the Pre-Reading document.

Applications for the 2022 Financial Advocacy in RARE Patient Impact Grant have closed. Winners will be announced the week of June 20th, so check back for updates.

View the pdf version of the application in full here 

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*Please note, foundations must be a member of the Global Advocacy Alliance to be eligible for this grant program. Click here to learn more about our Global Advocacy Alliance and become a member.

Congratulations to the 2021 Financial Advocacy RARE Patient Impact Grant Awardees!

The Akari Foundation

Through the 2021 Financial Advocacy in Rare (F.A.I.R.) Patient Impact Grant, the Akari Foundation hosted a series of eight educational webinars for Spanish speaking, Hispanic families. These webinars garnered more than 160 attendees and were effective in educating Spanish speaking, Hispanic patients, families and caregivers on how to access various resources in the community.

ALD Connect

Through the 2021 Financial Advocacy in Rare (F.A.I.R.) Patient Impact Grant, ALD Connect hosted a webinar to educate the ALD community about the financial aspects of transplant, including gene therapy, and help ALD patients and families navigate state and federal programs and access financial resources. The webinar has more than 350 attendees.

The Angelman Syndrome Foundation

Through the 2021 Financial Advocacy in Rare (F.A.I.R.) Patient Impact Grant, ALD Connect Angelman Syndrome Foundation has put together a comprehensive guide to help families navigate the insurance process in their state. Each state has various options of Medicaid and Waivers, which can seem overwhelming and difficult. Their hope is that their community finds the guide useful and helpful as they try to advocate for their individual with Angelman syndrome.

The DDX3X Foundation 

Through the 2021 Financial Advocacy in Rare (F.A.I.R.) Patient Impact Grant, the DDX3 Foundation provided financial planning resources, specifically related to special needs planning and special needs trusts, to families affected by DDX3X Syndrome through a presentation/webinar and one-on-one meeting with financial planners.

The Dup15q Alliance

Through the 2021 Financial Advocacy in Rare (F.A.I.R.) Patient Impact Grant, the Dup15q Alliance launched a Financial Resources Education Program to help patients and families understand the available resources through Medicaid and other financial assistance and the differences between Social Security Disability “SSD” and Supplemental Security Income “SSI,” and provide tools for navigating Special Needs Trusts that are available to families.

The E.We Foundation 

Through the 2021 Financial Advocacy in Rare (F.A.I.R.) Patient Impact Grant, E.WE Foundation launched a research initiative to assess the financial burden associated with living with a Trisomy 18 diagnosis, explore individualized financial concepts, identify whether early access to financial advocacy resources and education can contribute to proactively planning for medical complexities and identify whether financial literacy contributed to lower out of pocket expenses for families impacted by a Trisomy 18 diagnosis.

RareKC Foundation

Through the 2021 Financial Advocacy in Rare (F.A.I.R.) Patient Impact Grant, Rare KC developed a first-ever, evidence-based resource manual that provides resources and guidance across many aspects of a patient’s life and journey–encompassing family financial decisions, medical costs and insurance, educational opportunities, housing, and employment (for both the parents and the adult with a rare disease) at a regional and local level.

The United Mitochondrial Disease Foundation

The United Mitochondrial Disease Foundation’s mission is to promote research and education for the diagnosis, treatment and cure for mitochondrial disorders and to provide support to affected individuals and families. The United Mitochondrial Disease Foundation (UMDF) focuses on coordination, communication and collaboration. We bring people and resources together to  impact the diagnosis, treatment and cure for mitochondrial disease.