Participate
Health Equity in RARE Impact Grant
The application window for the RARE Mental Health Impact grant was March 6- April 7, 2023.
2023 Health Equity Grant Opportunities
The Health Equity in RARE Impact Grant program provides an opportunity for patient advocacy organizations to improve outreach strategies, develop content, and address challenges that affect underserved and underrepresented people within the rare disease patient community.
This year, nine Global Advocacy Alliance organizations received Health Equity in RARE Grants. These grants will provide an opportunity for patient advocacy organizations to improve outreach strategies, develop content, and address challenges that affect underserved and underrepresented people within the rare disease patient community. The nine organizations that received grants this year are:
Alliance to Cure Cavernous Malformation
While Alliance to Cure Cavernous Malformation has worked extensively to reduce health disparities in previous initiatives, this grant will allow the organization to focus public-facing activities and materials to now include disabled patients. A group of Black, Hispanic, and disabled patients will be trained as patient ambassadors who will be available for media interviews and to speak at conferences. The grant will also allow the organization to update the website and social media to be more accessible and be WCAG 2.1 compliant.
Hereditary Neuropathy Foundation
Hispanic populations often experience delays in diagnosis and barriers to treatment with Charcot-Marie-Tooth for a number of reasons. Hereditary Neuropathy Foundation will launch a targeted bilingual awareness campaign in several NYC neighborhoods. The focus of the No Camines Solo (Don’t Walk Alone) campaign will be educating the target population about CMT symptoms, diagnostic resources and available and affordable treatment options. Diagnosed individuals and families will also learn about future clinical trials and genetic counseling services.
Immune Deficiency Foundation
Immune Deficiency Foundation’s Underserved and Undiagnosed program will increase outreach efforts to improve diagnosis times and reduce barriers to care, specifically with Black and Hispanic patients. This will be achieved through translation services, public awareness campaigns, and strategic partnerships.
NR2F1 Foundation
The Matrix platform, a patient-centered data collection platform, is currently translated into several languages, and NR2F1 Foundation will now include ClinGen surveys in Portuguese, Hebrew and Korean. This will expand outreach into countries like Brazil, Angola and Mozambique where Portuguese is widely spoken, and South Korea (Korean) and the Middle East (Hebrew). NR2F1 partners with COMBINEDBrain to share translations with rare disorder umbrella groups (Global Genes/RARE-X, NORD, Eurodis) who can communicate the availability of the translated surveys to their member organizations.
Pulmonary Hypertension Association of Canada (PHA Canada)
This project will develop an Indigenous outreach strategy to provide Indigenous patients with culturally relevant resources to manage their disease and advocate for their care. Through this funding, PHA Canada will hire an Indigenous Peer Facilitator to conduct an environmental scan to identify existing strategies and programs providing information resources to Indigenous people, key individuals who may be in a position to facilitate the outreach activities and best practices to guide the implementation. The Peer Facilitator will also develop and conduct a focus group of Indigenous pulmonary hypertension patients to provide their insights and opinions. The focus group will follow the National PH Community Conference. PHA Canada will provide additional support to allow focus group participants to attend the educational sessions and connect with other pulmonary hypertension patients.
Raising Hope International Friends
Those diagnosed with sickle cell disease face significant barriers to accessing care, and there is also a lack of awareness of the symptoms and causes which lead to delays in diagnosis. Raising Hope International Friends will improve awareness and education, as well as open access to care and decrease the stigma associated with sickle cell disease in Uganda through the ministry of health, Village Health Teams.
RUNx1 Research Program
RUNx1 Research Program’s En Beneficio de su Salud (For the Benefit of Your Health) will provide educational and support resources for the Hispanic population. The program will provide language-appropriate and culturally aligned materials to educate and create awareness around RUNX1 Familial Platelet Disorder (RUNX1-FPD), including learning about symptoms, potential transformation to cancer, and how to advocate for care. RRP will also train bilingual peer support advisors to serve as liaisons between the organization and the Spanish-speaking community who can facilitate peer support gatherings and lead outreach to patients.
Tanzania Sickle Cell Warriors Association
With sickle cell disease diagnoses and mortality on the rise, Tanzania Sickle Cell Warriors Organisation seeks to create education and awareness of the science behind the disease and how to manage it. Through education, the organization will dispel rumors and ineffective methods that the families have employed, and share how proper medication and treatment can help reduce mortality of sickle cell disease in the region.
Team Telomere
Through previous research, Team Telomere knows that the ethnic and racial make-up of those diagnosed with Telomere Biology Disorder (TBDs) is not representative of the population impacted by TBDs, and is seeking to improve the capture of diverse clinical manifestations, barriers and health disparities in the TBD community. The organization will conduct a community research survey using their Research Roadmap to better understand barriers to receiving care, geographic health disparities, accessibility of resources, equitable research representation and diverse clinical manifestations.
Eligibility Requirements
Please note, foundations must be a member of the Global Advocacy Alliance to be eligible for this grant program. Learn more about our Global Advocacy Alliance and become a member.
Approaching Health Equity: Stories From Previous Health Equity Grant Awardees
Past Health Equity in RARE grant recipients discuss their experience with receiving the grant and working through their projects including:
* What worked well
* What challenges they encountered and lessons learned
* How they have continued their work in the years following receiving the health equity in rare impact grant
Thank you to the 2023 Health Equity Impact Grant Sponsors
Culture Series: Understanding Cultural Competence vs. Humility & Beyond | Wednesday, August 23, 2023, 11am – 12pm EST
Past Health Equity in RARE grant recipients will discuss their experience with receiving the grant and working through their projects including:
* What worked well
* What challenges they encountered and lessons learned
* How they have continued their work in the years following receiving the health equity in rare impact grant
Speakers: Coming Soon!
Reinvigorate Your Learnings from Health Equity Forum | Wednesday, October 25, 2023, 4pm – 5pm EST
Share what you’ve learned at the 3rd annual RARE Health Equity Forum:
* What lessons and/or skills did you take away?
* What would you like to see moving forward?
Speakers: Coming Soon
