Photo: Sick Cells

Health equity grants

Global Genes is accepting grant applications for our 2022 Health Equity in RARE Patient Impact Grant starting May 16th through June 15th. This grant opportunity is for Global Advocacy Alliance members (formerly the Foundation Alliance – Foundation Alliance members must re-enroll to qualify) and will fund the creation and implementation of programs, tools, resources and research to better reach and serve underrepresented communities, and equip the rare disease community with the tools and knowledge necessary to address and reduce factors that contribute to health inequities. Grant applications will be accepted through June 15th at 11:59pm ET and is open to US and international organizations.

Apply Now

View the pdf version of the application in full here and important information in the Pre-Reading document. 

Background

The Health Equity in RARE Patient Impact Grant program provides an opportunity for patient advocacy leaders to improve outreach strategies and address challenges that affect underserved and underrepresented patient communities. This grant will be awarded to 8 – 10 Global Advocacy Alliance members who are interested in expanding their outreach, education, and awareness efforts supporting cultural competency. It will give foundation leaders and patient advocates the ability to stand up data collection tools, resources, and processes to better engage or understand the needs of their underserved communities, ultimately leading to more robust data sets for their rare disease, established standards of diagnosis and care, and a more comprehensive understanding of their disease and patient journey. Projects may address health inequities including but not limited to race, ethnicity, age, gender identity, religion, socioeconomic status (income, level of education, and occupation), geographic location and/or linguistic barriers. Sample outcomes include: 

  • Establish practices to support equal access to diagnostics, research and care
  • Increase cultural competency within and across rare disease patient communities
  • Develop culturally appropriate communications and materials to help educate Black, Indigeous, Hispanic, LGBTQ+ and other underserved and underrepresented patient communities about rare diseases, diagnostic testing and the importance of participating in clinical trials
  • Identify and disseminate diversity, equity, and inclusion best practices across the rare disease community

Participants will be invited to attend a series of workshops on cultural competency led by Global Genes and the RARE Health Equity Council. The workshops will address how to identify your underserved and/or underrepresented patient community, cultural considerations for working with diverse populations and best outreach and communication practices. 

Applying for the Grant

Accepted projects must focus on underserved and underrepresented rare disease patient communities, including but not limited to race, ethnicity, age, gender identity, religion, socioeconomic status (income, level of education, and occupation), geographic location and/or linguistic barriers.

Accepted projects include research, tools, resources and programs that provide guidance, education and assistance for underserved and underrepresented patient communities due to health inequities that may impede access to diagnosis, therapy and disease management. 

  • Underserved populations are ones that are disadvantaged in relation to other groups because of structural/societal obstacles and disparities. 
  • Underrepresented describes any subset of a population that holds a smaller percentage within a significant subgroup than it holds in the general population. For example, women and women of color are often an underrepresented group in science, technology, engineering, and mathematics.

Projects may fall into one of three categories: 

  • Education – Developing, updating and distributing educational resources for the underserved and underrepresented patient community about rare disease, diagnostic testing and/or the importance of participating in clinical trials and research.
    • Examples include: Translating existing materials into other languages (including infographics, toolkits, one pagers, website etc.), updating language to be more inclusive and/or an appropriate literacy level. Developing toolkits, awareness campaigns, infographics, one pagers etc. for a targeted patient population
  • Research – Understanding cultural sensitivities of the underserved and underrepresented patient community regarding rare disease, diagnostic testing and/or the importance of participating in clinical trials
    • Examples include: Evaluation of internal organizational structure and practices as it pertains to diversity, equity, inclusion, and accessibility. Hosting a roundtable discussion, interviews or small working groups with community members from underserved / underrepresented backgrounds to better understand their needs.
  • Outreach – Expanding patient community through awareness and outreach efforts intended to widen the demographics of the patients we serve to be more inclusive and / representative.
    • Examples include: Virtual Workshops, social media campaigns, networking. Rebranding website, social accounts and/or print materials to be more representative and inclusive.

All applications are due by June 15, 2022 12:59PM ET. Organizations receiving grants will be notified by July 15, 2022. Please contact [email protected]

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

Apply Now

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.

Thank you to our Sponsors!

Congratulations to the 2021 Health Equity RARE Patient Impact Grant Winners!

ALD Alliance
Angioma Alliance
Bleeding Disorders Alliance Illinois
CFC International
Foundation for Sarcoidosis Research
National PKU News
Sick Cells
The Sickle Cell Association of Texas Marc Thomas Foundation
The Akari Foundation
Uplifting Athletes

Through RARE Health Equity Impact Grants Awarded in 2021, rare disease foundations were able to:

  • Start a Health Diversity & Inclusion Working Group for multicultural, multi-ethnic, and LGBTQ+ people with bleeding disorders. – BDAI, Health Equity Grant Recipient
  • Fill a gap that has existed in treatment equity for those with PKU for decades by combining and translating three vital resources into Spanish. – PKU, Health Equity Grant Recipient
  • Create initiatives and committees to increase understanding of sarcoidosis as experienced by African American women, and ensure all campaigns represent and resonate with women of color. – FSR, Health Equity Grant Recipient