In July 2022, Global Genes, a nonprofit 501(c)(3) organization and global advocate for those with rare diseases, awarded its Health Equity in RARE Patient Impact grants to members of its Global Advocacy Alliance. The recipients of the grant include PFIC Network, the Cystic Fibrosis Research Institute, Team Telomere Inc., COMBINEDBrain Inc., SCN2A Asia Pacific, XLH Network, the International Prader-Willi Syndrome Association, the Myhre Syndrome Foundation, and the Raymond A. Wood Foundation.
PFIC Network Grant and Impact
According to PFIC Network, their grant was used to develop an educational outreach project entitled “REACH” Around the Globe. REACH is an acronym which stands for Research, Education, Advocacy, Collaboration, and Hope. The goal of this project was to create a three-part virtual workshop series and survey framework leveraging interpretation services.
Through this, PFIC Network aimed to better understand the various issues, inequities, and disparities of patients with PFIC on a global scale. Understanding these issues is a crucial part of solving them. In fact, by understanding these issues, PFIC Network hopes to create advocacy plans specific to each county and provide solutions to issues using multi-stakeholder collaborative efforts.
So far, PFIC Network has completed two of their three-part series, with a focus on India and Pakistan. PFIC Network hopes to expand Project REACH in the future to meet more patient needs.
Their website provides more insight into the specific data sourced from this project. For example, the pilot survey found that a majority of patients had not been involved in a support group for PFIC, struggled with medication access, and had to travel long distances for adequate medical care. PFIC Network, through Project REACH, was able to provide more resources, education, awareness, and interpretation; facilitate stronger bonds between patients and doctors; empower patients to advocate for their own needs; and translate educational brochures into Hindi and Urdu.
About PFIC Network
PFIC Network is a 501(c)(3) charitable organization and patient advocacy organization with a mission to inspire hope and improve the lives of patients and families living with progressive familial intrahepatic cholestasis (PFIC) worldwide. The organization is run entirely by patients and caregivers and works closely with physicians to identify and share community needs. Resources on PFIC Network include research grants, a patient registry, patient support groups, information, and more.
Learn more about PFIC Network here.
About Global Genes Health Equity in RARE Patient Impact Grants
Global Genes explains that:
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.
It will give foundation leaders and patient advocates the ability to stand up data collection tools, resources, and processes to better engage and 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.
All participants and grant awardees are required to attend a series of workshops centered around cultural competency.
