Project REACH Across the Globe
This July, PFIC Network was honored to receive a Global Genes Health Equity in RARE Patient Impact grant to address challenges affecting underserved patient communities.
With this grant, we created a new education and outreach project called “REACH” Around the Globe (Research, Education, Advocacy, Collaboration, and Hope): a three-part workshop series and survey framework.
REACH is an International Alliance initiative to understand healthcare disparities facing international PFIC patients, and to develop country-specific advocacy action plans through multi-stakeholder collaboration.
We successfully hosted our first two REACH series in September 2022 for the communities of India and Pakistan.Through the project we were able to:
- Galvanize and solidify partnerships between patients and healthcare providers,
- Formally assess and prioritize patient needs, and
- Create advocacy action plans specific to each country.
With direct outreach, targeted education, and interpretation services, we were able to engage new PFIC patients in India and Pakistan who were previously unaware of the resources that were available to them, and of how they could get involved and advocate. This project also empowered patient leaders by breaking down linguistic barriers so they could speak to their unmet needs in their own language and truly feel heard and understood.
Through this project, PFIC Network was also able to fulfill the need to translate the PFIC Educational Brochure into Hindi to make this useful tool more accessible to patients of India. Similarly, PFIC Network shipped ten of its already translated Urdu PFIC Educational Brochures to the Children’s Hospital of Lahore, Pakistan per healthcare provider request.
The PFIC stakeholder community is global, and this project revealed that the REACH framework can be successfully implemented to identify and help address the unique challenges of underserved PFIC patients in countries with severe healthcare disparities.
Resultantly, the advocacy action plans provide patients with the necessary partnerships and clarity on next steps they can actively take to tackle their country-specific challenges. This coordinated multi-stakeholder attention and strategy is a resource that PFIC patients in India and Pakistan have never had before.
Over time, PFIC Network plans to implement Project REACH for all members of the International Alliance – with the goal to make PFIC Network’s mission and advocacy objectives more equitable and accessible for all.