Company

Initiative

Agios Pharmaceuticals, Inc.

Sickle Cell Warriors as Partners: Driving Innovation Together

Alexion, AstraZeneca Rare Disease

Advancing Patient-Informed Clinical Trials Through Intentional Patient Involvement

Amgen

Reimagining Patient Support: Building a Seamless Ecosystem Around Patients' Needs

Amgen, Inc / US Medical / Corrie Lipids

Corrie Lipids Program

Ardelyx

Engagement with Kidney Patient Community

Bayer AG

LIVED EXPERIENCE IN ACTION: FROM INSIGHT TO CHANGE

Becton, Dickinson and Company

PureWick® Flex Female External Catheter System

Bristol Myers Squibb

Patient Expert Engagement Resource (PEER) Program

Catalyst Pharmaceuticals, Inc. a part of Angelini Pharma S.p.A. and the LEMS Family Association

Beyond Diagnosis: Transforming Life with LEMS

CG Oncology and the Bladder Cancer Advocacy Network (BCAN)

Partnership to Enable Meaningful Support for Bladder Cancer Community

Daiichi Sankyo

Changes that Matter

Eisai

Magnolia Meals at Home™

Ember

Ember Companion

Evidently

Evidently Clinical Data Intelligence

Ferring Pharmaceuticals

Patient-Centered Innovation in Bladder Cancer

Gilead Sciences

Yeztugo (HIV PrEP Innovation)

IEEPO [Led and represented by an External Advisory Committee, funded by F. Hoffmann-La Roche Limited (Roche)]

International Experience Exchange with Patient Organizations (IEEPO)

Insightec

Exablate® Neuro

Johnson & Johnson

The Patient Partnership: Expert by Experience

kaleo, Inc.

AUVI-Q® (epinephrine injection)

Lung Bioengineering (A subsidiary of United Therapeutics Corp.), American Thoracic Society, Lung Transplant Foundation, National Scleroderma Foundation, Sarcoidosis Research Foundation, PF Warriors, Pulmonary Fibrosis Foundation, Pulmonary Hypertension Association, Taylor's Gift, Transplant Life Foundation, Trio and Wescoe Foundation for Pulmonary Fibrosis

Lung Transplant Awareness Day

Menarini Stemline

MBC Patient Council: empowering patients in elevating their voices in healthcare decision-making through joint company/patient advocate co-creation initiatives

Merck & Co., Inc.

Let's Talk Trials

Natera

Signatera: Putting Patients at the Center of Precision Oncology

Novartis & the Sjögren's Foundation

Advancing Patient-First Innovation in Sjögren's Disease: A Long-Term Collaboration Between the Sjögren's Foundation and Novartis

Organon & the United Nations Population Fund (UNFPA)

Addressing Health and Well-Being of Women and Girls: A Multi-Program Approach Between Organon and UNFPA

Parexel and Foundation Fighting Blindness

Designing Trials With the Community They Serve: The Parexel and Foundation Fighting Blindness Patient Advisory Council Model

Peel Therapeutics, Inc.

 PEEL-224: Reimagining Cancer Treatment

Pfizer Inc.

Patient Advocacy Leadership Collective

Precision Neuroscience

 Layer 7: A high-bandwidth, minimally invasive, and safely removable brain-computer interface designed to help people living with neurological conditions communicate, connect, and operate digital devices using thought alone

Prime Medicine

Prime Editing

Reverba Global, an IQVIA business

Patient Experience Engine

Roche Canada & Patient Partners

Patient Inclusivity Initiative

Rocket Pharmaceuticals, Inc.

KRESLADI™ for the Treatment of Severe Leukocyte Adhesion Deficiency-I

Servier

GlioPact / A holistic co-creation framework with patients across the continuum of innovative care development & delivery

SpliceBio

A Patient-Centered Journey from Natural History to Treatment in Stargardt disease

Travere Therapeutics

Surge to Save Newborns

UroGen Pharma

Elevating the Patient Voice in Rare Urothelial Cancer: Kathy's Journey with Low-Grade UTUC

Viver Health LLC

A Patient-First Approach to Sexual Well-Being: Co-Creation and Impact of an Evidence-Based, Visually Engaging Educational Resource to Improve HIV/AIDS and STI Knowledge, Engagement, and Prevention Among Communities Disproportionately Affected in the United States.

Workit Health

Patients as Designers: Saving Lives from Addiction

Zebricks

The Zebricks Platform: Continuous Intelligence on the Global Patient Advocacy Ecosystem

Company

Initiative

A Cure In Sight

ACIS Patient-Driven Innovation Ecosystem

ADCY5.org

ADCY5.org, Patient-Driven Research and Family Support Model

Alzheimer's Association

National Early-Stage Advisory Group

Autoimmune Registry Inc.

The Second Signal

Biohub

Rare As One Project

Breakthrough T1D

Project ACT (Accelerating Cell Therapies)

Bringing Humanity into Medicine in Collaboration with Vera Therapeutics

A New Paradigm for Patient Partnership and Patient-Centered Innovation

Care Beyond Limits- Microcephaly Africa Foundation

Dignity Centres of Excellence: A Radical Empathy Model for Microcephaly Care in Africa.

Cedars-Sinai Health Sciences University

Master of Science in Health Systems (MSHS)

Colorectal Cancer Alliance

Project Cure CRC featuring KLEOS

Congenital Hyperinsulinism International (CHI)

Open Hyperinsulinism Genes Project

Crohn's & Colitis Foundation

IBD Plexus

Cure HHT

Nothing About HHT Without Us: A Patient-Governed Evidence Engine for a Disease With No Approved Therapy

Cystic Fibrosis Foundation

Co-Producing Innovation: Patient and Family Partnership in Transforming Cystic Fibrosis Research and Care

Epilepsy Foundation of America

Epilepsy Learning Healthcare System (ELHS), the Research Ambassador Program, and Sage (the Foundation's AI Epilepsy Assistant)

EURORDIS-Rare Diseases Europe

The collective voice of people living with a rare disease in Europe

flok Health

Care That Connects: A Community-Led Model Integrating Metabolic Care and Research

Fondazione Telethon Ets

A Unique Non-Profit Model to Advance Biomedical Research Towards Cures for Rare Genetic Diseases

Foundation for Angelman Syndrome Therapeutics (FAST)

A Venture Philanthropy Model to Make the Impossible Possible for Rare Disease

FOXG1 Research Foundation

FRF-001: A Nonprofit Drug Development Model for Rare Disease, Sponsored by a Patient Foundation

Fundació Privada per a la Recerca i la Docència Sant Joan de Déu

SJD Strategic Patient Involvement Plan in Research and Innovation

Genetic Alliance

RISE: Rare Insights, Solutions, Empowerment

Global Genes

Sleep Data Collection Initiative

GlobalSkin (International Alliance of Dermatology Patient Organizations)

Patient-Reported Impact of Dermatological Diseases (PRIDD)

Hairy Cell Leukemia Foundation

From Registry to Guidelines: A Patient-Governed Model for Rare Disease Research

Hermansky-Pudlak Syndrome Network Inc.

The HPS Network Patient-Driven Rare Disease Research and Care Model

HSE

A public-patient partnership: putting people at the heart of health and social care transformation in Ireland

KCNT1 Epilepsy Foundation

KCNT1 Trial-Ready Ecosystem

Lipodystrophy United

Voices of LU

Multiple Myeloma Research Foundation (MMRF)

Path to a Cure

National Bleeding Disorders Foundation

Bleeding Disorders Research Collaborative (BDRC)

National Kidney Foundation (NKF)

NKF KidneyCARE Study

NMDP

Donor for All: Ensuring Every Patient Finds a Match

Obesity Action Coalition

Stop Weight Bias Campaign

Parent Project Muscular Dystrophy (PPMD)

Patient First Advocacy

Parkinson's Foundation

Research Advocates Program

Patient Advocate Foundation's Patient Insight Institute in collaboration with Michigan Oncology Quality Consortium and Patient and Caregiver Oncology Quality Council

Advancing Equity in Cancer Care: A Framework for Addressing Social Determinants in Michigan

Patients First Access Model[Søren Jarl Christensen, John Gerbild and Danielle Drachmann]

August's Bridge to Access

Peter Cohen Foundation, operating as EverythingALS and EverythingALZ

EverythingALS Citizen-Driven Research and Innovation Platform

Progressive Familial Intrahepatic Cholestasis Advocacy and Resource Network

The IMPACT Framework: Identifying research targets by Merging Patient And Clinician Treatment information

RARE Foundation

Emboldening Rare Disease Community Engagement through the Guide to Patient Involvement in Rare Disease Therapy Development ("PFDD Guide") and RareGiving Program

Rare Patient Voice

Patients at the Center: Understanding Preferences in the Age of Decentralized Trials

Recurrent Respiratory Papillomatosis Foundation

Even One Less Surgery: How Patient Voice Became Part of the Regulatory Record

Susan G. Komen

Susan G. Komen's Advocates In Science® Bringing Focus, Urgency and Accountability to Patient-Centered Breast Cancer Research

TB Alliance

Patient-Centered TB Drug Development: How TB-Affected Communities Shaped BPaL/M from Discovery to Delivery

TESS Research Foundation

Powered by Patients: TSHA-105 Gene Therapy for SLC13A5 Epilepsy

The ALS Association

ALS Focus Survey Program

The CureLGMD2i Foundation

Shaping Clinical Trials and the Treatment Landscape

The International Children's Advisory Network

iCAN Voice Initiative: Kids and their Families as Co-Creators of Pediatric Research & Healthcare

The MED13L Foundation

From Families to Frontiers: A Patient-Driven Research Ecosystem for MED13L Syndrome

The Patient-Driven PSC Research and Therapeutic Development Initiative

The Patient-Driven PSC Research and Therapeutic Development Initiative

Triage Cancer

Legal & Financial Navigation Program

Wayfinder Patient Advocates

The Wayfinder Continuum