Photo: Sick Cells
Applications for the 2022 Health Equity in RARE Patient Impact Grant were open from May 16 to June 15, and are now closed. The winners of the 2022 Health Equity RARE Patient Impact Grant, and their initiatives:
- Myhre Syndrome Foundation – The 4You project will bring together four speaking languages – Spanish, German, French and Italian, translating their website and key informational documents to bring greater inclusion and understanding, to not only the patient population but their associated care teams and providers.
- International Prader-Willi Organisation (PWS) – Their goal is to subtitle educational films and translate consensus documents into Standard Arabic for Arabic-speaking patients, caregivers, and healthcare professionals who may currently or in the future support people with PWS and their families.
- Raymond A. Wood Foundation – The Spanish Language Education and Outreach Program will provide access to educational resources for the Spanish language population that is affected by craniopharyngiomas.
- Team Telomere Inc. – Their project will span several dimensions: developing and translating critical material into Spanish, creating more accessible resources through effective distribution, and forming systems for sustainable community reach.
- Cystic Fibrosis Research Institute (CFRI) – The Faces of CF Diversity and Inclusion outreach project will advance CFRI’s goals to expand awareness of cystic fibrosis and its symptoms among communities of color, while raising awareness of diversity among the CF community and medical care providers.
- COMBINEDBrain Inc – ClinGen medical surveys are internationally acceptable by the medical and research community, and collected on other large platforms, such as RareX. COMBINEDBrain plans to translate the ClinGen Surveys into European French, Italian, and German, which will make it possible to reach an additional 220 million people. They also plan to share these translations with all other researchers and foundations directly.
- PFIC Network, Inc. will organize and host a series of virtual one-on-one meetings and workshops for patients in India and Pakistan, utilizing interpretation services to break linguistic barriers and increase patient representation in their global patient advocacy program.
- SCN2A Asia Pacific will translate their “What is SCN2A” and “Clinical trials – all you need to know” brochures into Chinese, Japanese, Korean and Hindi, as well as develop a clinical trials microsite translated into the four key languages of their region.
- XLH Network will create a “snapshot” of targeted geographical areas that will demonstrate the demographics and include data obtained from discussions with families, clinicians, and other health care providers in that area. This snapshot will show how they can best utilize further outreach efforts to increase the likelihood that families who are undiagnosed but living with XLH will have the ability to access appropriate diagnosis and treatment.
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, Indigenous, 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.
*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.
