Patient Partners for Equity
A Collaborative Partnership Model to Address Health Equity
We have seen firsthand the effects social determinants of health have on healthcare access, healthcare quality, and affordability manifesting as social and financial need gaps to insurance and safety net programs designed to help patients avoid financial devastation and poor health outcomes. The PAF Patient Partner for Equity program serves to amplify the impact non-profit patient advocacy organizations collectively have in the lives of patients and communities who continue to experience healthcare inequities, facilitating opportunities to attain the highest level of health, while producing data and patient stories that enable advocacy and policy activities to address social needs gaps.
As a member of PAF’s Patient Partners for Equity, your organization will receive the following benefits:
- Recognition of your organization as a Patient Partner in Equity on PAF’s websites including your logo, an organizational profile, and reciprocal links between our website and yours.
- Personalized education about PAF’s patient support and educational programming delivered to your team(s) virtually in live and recorded formats.
- Regular partnership e-communications including the PAF Spotlight, NPAF Policy Dispatch Newsletter and other patient focused resources, public policy updates and events.
- Complimentary virtual membership to National Patient Advocate Foundation’s (NPAF) Policy Consortium
- Spotlight of your organization on PAF’s websites once per year
As a member of PAF’s Patient Partners for Equity, we request that you provide the following:
- A link to PAF’s websites, where appropriate (partner page, patient resource page or other content area)
- Allow PAF to provide training about PAF’s patient support programs annually to your staff working with patients, families, and caregivers
- Participation in an annual survey or meeting to gain feedback on the program
- Provide a single point of contact for general partnership touchpoints
Patient Partners for Equity
Our mission is to help establish and sustain patient-centric education, awareness, training, research, and engagement programs aligned with the FDA’s patient-focused drug development (PFDD) paradigm in the following ways:
1. Diversity Patients Alliance Program: Advocate for global diversity, equity, and inclusion in clinical trials and improve access to clinical
research as a care option for patients living with rare diseases. Collaborate for public health policy development & implementation such as
Rare Disease and Orphan Drug Policies between US, India, and other countries.
2. Tech-enabled Patients Concierge: Connect patients living with rare diseases in India, the USA, and globally with clinical trials, patient advocacy
groups, research, and international Consortia such as Global Genes, IRDiRC, NORD, RARE-X, RDI, and UDNI.
3. Research Programs: Conduct and facilitate cross-border research collaborations for genetic disorders.
4. Corporate Diversity Advisory Council (CDAC): will bring together biotech, pharma, and medical device sponsors, diagnostic companies, and
other stakeholders of the life science industry as members of this council to set the agenda for advocacy and pre-competitive cooperation.
5. National and international conferences: Bring together stakeholders of rare diseases.
Our Vision: A world in which no one is harmed by sepsis.
Our Mission: Save lives and reduce suffering by improving sepsis awareness and care.