2023 Health Equity in RARE Impact Grant Recipients Announced

Nine Global Advocacy Alliance organizations received the 2023 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.

This year, more than 102 patient advocacy groups applied, in three categories: outreach, education, and research. Congratulations to the organizations who received the 2023 Health Equity in RARE Impact Grants! 

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

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. 

The 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. 

Thank you to all of the Global Advocacy Alliance members who applied for a Health Equity in RARE grant this year. For more information about supporting the RARE Impact Grants, contact Kristin.Soto@globalgenes (Business Development), [email protected] (Business Development) or Global Advocacy Alliance. A special thank you to the sponsors of the 2023 Health Equity in RARE Impact Grant: AllianceRX, Avidity Biosciences, Beam Therapeutics, Horizon, and Travere Therapeutics.