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

ADAP Advocacy Association

The ADAP Advocacy Association (aaa+®) is a national 501(c)(3) nonprofit organization incorporated in the District of Columbia to promote and enhance the AIDS Drug Assistance Programs (ADAPs) and improve access to care for persons living with HIV/AIDS. aaa+® works with advocates, community, health care, government, patients, pharmaceutical companies and other stakeholders to raise awareness, offer patient educational programs, and foster greater community collaboration.

Allergy & Asthma Network

At Allergy & Asthma Network, we are here to serve and support you. We work with national and local partners to train healthcare professionals and host events and screenings that reach people directly in their communities. We raise awareness and educate millions each year with easy-to-understand, medically reviewed resources in English and Spanish. We advocate at the federal and state levels to improve access to care and affordable medications. We work to ensure the patient voice is included in research and drug development. Your health and well-being are at the heart of our work. Our goal is to improve quality of life and achieve equitable and optimal health outcomes for adults and children living with these chronic conditions, especially those in underserved communities.

Angelic Warrior Foundation
The mission of the Angelic Warrior Foundation is to increase Colorectal Cancer Awareness and to provide the emotional and financial support that patients, caregivers, and families need in order to thrive.
Bay Area Cancer Connections

Bay Area Cancer Connections supports anyone affected by breast or ovarian cancer with personalized services that inform and empower.

BreastCancerTrials.org

BreastCancerTrials.org is a free, patient-friendly, non-profit clinical trial matching service that helps people with any stage of breast cancer learn about and find clinical trials that are right for them. BreastCancerTrials.org lists over 500 trials available in the United States and provides trial information in patient-friendly language. Developed in 2008, BreastCancerTrials.org's mission is to empower all patients to learn about clinical trials as an option for care.

Cervivor, Inc.

Cervivor is a global community of patient advocates who inspire and empower those affected by cervical cancer by educating and motivating them to use their voices for creating awareness to end stigma, influence decision and change, and end cervical cancer.

Cystic Fibrosis Lifestyle Foundation
The mission of the CFLF is to empower people living with cystic fibrosis (CF) to live stronger and longer through healthy and active lifestyles.
Fight 4 Cure Inc
Helping one individual at a time...fostering hope for individuals affected by cancer.
Global Genes

Global Genes provides hope for the more than 400 million people affected by rare disease around the globe. We fulfill our mission by helping patients find and build communities, gain access to information and resources, connect to researchers, clinicians, industry, government, and other stakeholders, share data and experiences, stand up, stand out, and become effective advocates on their own behalf.

Indo US Organization for Rare Diseases (IndoUSrare)

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.

Kelly's Dream

Kelly’s Dream is a 501(c)3 non-profit foundation that focuses on easing the financial and emotional strain of cancer, raising melanoma awareness, and spreading the gift of hope.

Leslie's Week

Our LESLIE’S WEEK mission is to coordinate and provide aid and relief to Stage 4 Breast Cancer women and their families. Stage 4 Breast Cancer women and their families are gifted a donated vacation away from cancer which includes entertainment, accommodations, and a BBQ and Music Festival in their honor. Our Educational Assistance Fund supports the future of the children when their Stage 4 Breast Cancer mother succumbs to her disease. This is a time for the family, whose mother is in decline, to come together and gather their spirits in a celebration of life, creating family memories and refueling for the continued battle against this debilitating disease. Stage 4 Breast Cancer is terminal.

Melanoma Action Coalition

Organizations across the country are working every day to tackle melanoma, the most deadly of all skin cancers. Many of these organizations are grass-roots foundations established and led by those who have been touched personally by this disease. The Melanoma Action Coalition accelerates the end of melanoma by bringing together these organizations, who are at the forefront of this fight, and providing the support they need to amplify their effectiveness and impact. MAC also welcomes individual melanoma advocates and fundraisers.

Sepsis Alliance

Sepsis Alliance is the leading sepsis organization in the U.S. working in all 50 states to save lives and reduce suffering from sepsis. Sepsis Alliance is a charitable organization run by a dedicated team who share a strong commitment to battling sepsis.

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.

Sharsheret

Sharsheret, a national non-profit organization, improves the lives of Jewish women and families living with or at increased genetic risk for breast or ovarian cancer through personalized support and saves lives through educational outreach. While our expertise is in young women and Jewish families as related to breast cancer and ovarian cancer, Sharsheret programs serve all women and men.

The DONNA Foundation

Our mission is to provide financial assistance and support to those living with breast cancer and fund ground breaking breast cancer research.