In This Newsletter
TRAIN eNews is delivered directly to organizations participating in The Research Acceleration and Innovation Network (TRAIN). TRAIN is an affinity network of foundations interested in taking a more strategic and entrepreneurial approach to their role as funders of medical research. TRAIN convenes dozens of forward-thinking foundations to learn from one another and share their novel solutions with the rest of the medical research system. To learn more about becoming a TRAIN organization, visit the TRAIN application page.
News From FasterCures
FasterCures Vital Voices Webinar Series
Join us for our third webinar, “Where the Rubber Meets the Road: Navigating State-Level Coverage and Payment Decisions,” on December 8 from 12 to 1 p.m. EST. Register to attend the virtual event—we look forward to seeing you there!
Our most recent webinar, held on September 30, was the second in our three-part series. “Just the Facts: Patient Experience Data to Inform CMS Decision-Making” focused on providing practical guidance on how patient organizations can effectively collect, structure, and present patient experience data to support the Centers for Medicare and Medicaid Services’ engagement across coverage pathways.
Complete the FasterCures Patient Organization Needs Assessment by January 9
Every three years, FasterCures surveys patient organizations to learn how you engage in research, support innovation, and advance patient-centered outcomes. Your input will guide the development of tools and training tailored to your needs, highlight the vital role patient organizations play in research, and inform advocacy, policy, and community-wide initiatives.
The survey takes about 20 minutes to complete and requires no preparation. All responses are de-identified and analyzed in aggregate. Share your insights by January 9 to help ensure the findings reflect the true impact and needs of patient organizations.
Coming Soon: Applications for FasterCures’ 2026–2027 LeadersLink Cohort
LeadersLink supports the development of new leaders of biomedical research-focused nonprofit organizations. This highly selective two-year program aims to build leadership skills, foster a collaborative community, and grow professional networks while addressing participants’ top priorities through mentorship, convenings, access to Milken Institute events, and a capstone project.
The central focus of the upcoming cohort will be advancing research through strategic industry partnerships, equipping participants to identify, cultivate, and leverage collaborations that accelerate progress toward their mission. Applications will open in January 2026 and will be accepted until mid-February!
Join FasterCures TRAIN Communities of Practice
The FasterCures TRAIN Communities of Practice groups bring together leaders to share insights, identify barriers, and codevelop solutions that strengthen patient engagement across the medical research and regulatory ecosystem.
For 2026, we will host a unified group that will meet six times over the year and rotate through the following core topics: money (fundraising and funding strategies), patients (patient insights, participation, and data), expertise (organizational expertise and scientific strategy), and partnerships (developing research collaborations).
If you would like to join, please fill out this application form. Sign-ups are accepted on a rolling basis, but we encourage all who are interested to apply by December 19.
Milken Institute Future of Health Summit 2025
From November 4 to 6, the Milken Institute hosted our annual Future of Health Summit in Washington, DC. This event convened the best minds in the world to confront the toughest challenges in health by matching human, financial, and scientific resources with the most innovative and impactful ideas to drive better health outcomes for everyone in every community.
If you weren’t able to join us, public session recordings are now available on the conference web page for you to watch at your convenience. Thank you to all TRAIN organizations that attended. We look forward to building on the momentum of this conference in our future programmatic activities!
TRAIN 20th Anniversary Impact Stories
In celebration of TRAIN’s 20th anniversary, we shared TRAIN Impact Stories every month in 2025, featuring reflections from members across our network on the impact of patient organizations in advancing research and how TRAIN has supported their efforts.
Our three most recent impact stories feature:
- Susan Dando, executive director, Smith-Kingsmore Syndrome Foundation
- Sara Loud, CEO, Accelerated Cure Project for Multiple Sclerosis
- Alice Bast, founder and CEO, Beyond Celiac
Visit the links above to learn more about their efforts!
TRAIN Organization Updates
TRAIN Welcomes New Organizations
FasterCures is pleased to announce the recent addition of the following organizations to TRAIN:
- The Follicular Lymphoma Foundation is a global nonprofit dedicated to accelerating cutting-edge research and collaboration to improve treatment and outcomes for over one million people worldwide.
- The Community Liver Alliance is a national nonprofit that empowers patients with liver disease, caregivers, and providers through awareness, education, advocacy, support groups, and community-based research.
Pancreatic Cancer Action Network Collaborates with Smart Patients to Launch Online Community for Pancreatic Cancer Patients and Caregivers
The Pancreatic Cancer Action Network (PanCAN) has partnered with the online health community platform Smart Patients to launch a dedicated online support community for individuals affected by pancreatic cancer, including both patients and caregivers. The PanCAN Smart Patients Community provides a moderated environment where members can ask questions, discuss treatments, compare experiences, and learn from others who truly understand their journey. This resource helps reduce isolation and empowers patients and families with shared experience. Find more information.
Crohn’s & Colitis Foundation: Advancing Precision Medicine Through Intentional Design
In a recent Endpoints News article, Angela Dobes, senior vice president of IBD Plexus at the Crohn’s & Colitis Foundation, discusses how IBD Plexus—the foundation’s research accelerator—is advancing precision medicine. The platform bridges critical gaps in real-world evidence, accelerates discovery, and transforms the future of inflammatory bowel disease research and care.
ADDF Announces $1.5 Million in New Grant Funding for Promising Treatments
The Alzheimer's Drug Discovery Foundation (ADDF) announced $1.5 million in new grant funding awarded in September and October to support three innovative Alzheimer’s disease treatment programs. Two grants support drug candidates designed to preserve memory and synaptic function. A third supports the development of a novel class of small-molecule compounds aimed at activating the TrkB receptor for broader neuroprotection, including in Alzheimer’s, Parkinson’s, and Huntington’s diseases. The initiative highlights ADDF’s commitment to accelerating translational research and advancing promising treatments toward first-in-human studies.
Friends of Cancer Research ECA Pilot Project
Friends of Cancer Research is launching the External Control Arm (ECA) Pilot Project to evaluate how external data—including both historical clinical trial datasets and real-world data—can be used to construct external control arms in oncology clinical trials, particularly in contexts where traditional randomized controlled trials are infeasible or ethically challenging. The initiative will bring together partners from industry, academia, and patient-advocacy groups to identify best practices for when and how ECAs can support regulatory decision-making and accelerate drug development in areas of high unmet need.
Food Allergy Fund Announces Microbiome Research Collective and Highlights from Leadership Forum
The Food Allergy Fund announced a first-of-its-kind, multimillion-dollar collaboration uniting leading research institutions to uncover how gut health influences allergic disease and to develop precision treatments. The new Microbiome Research Collective will bring together leading research institutions to investigate the intersection of microbiome health and food allergies to advance innovative prevention and treatment strategies. Additionally, on November 17, the Food Allergy Fund hosted its DC Leadership Forum featuring leaders from government (including Health and Human Services Secretary Robert F. Kennedy Jr.), the food industry, media, public health, and academia. View the session recordings.
Ana Rita Moreira, Time=Lives: Milken Institute Future of Health Summit
Ana Rita Moreira, executive director of the v-ATPase Alliance, gave a talk at the Milken Institute's Future of Health Summit on November 6, under the theme “Time=Lives.” She shared her personal experiences, the motivations behind founding the alliance, and her compelling message that “every single day your caution forces a delay is an innovation tax that costs a life.” Watch Moreira’s talk.
News You Can Use
CDER/CBER Rare Disease Evidence Principles
The Food and Drug Administration’s (FDA) Center for Drug Evaluation and Research (CDER) and Center for Biologics Evaluation and Research (CBER) released the Rare Disease Evidence Principles (RDEP), a proposed pathway to support the approval of therapies for ultra-small, genetically defined rare diseases with severe, rapidly progressive courses and no adequate treatments. Submissions must focus on a genetic defect that affects fewer than 1,000 Americans. Under RDEP, sponsors—after engaging FDA via the Investigational New Drug process—may establish substantial evidence of effectiveness with one adequate and well-controlled study, supported by robust confirmatory evidence. Acceptance decisions involve consultation with the CDER/CBER Rare Disease Policy and Portfolio Council, and products may carry additional postmarketing requirements.
NORD Unveils IAMRARE Mobile App Companion to IAMRARE Registry Platform
The National Organization for Rare Disorders (NORD) has released the IAMRARE® mobile app, a companion to its registry platform designed to boost patient and caregiver participation in rare disease research. The app enables users to log in using the same credentials as the online registry, complete surveys, upload selected health records, receive study reminders, and track their own data trends. With more than 70 natural history studies underway across 165 rare diseases, the mobile app aims to accelerate data collection and enhance engagement.
PCORI Funding Announcement
The Patient-Centered Outcomes Research Institute (PCORI) funds patient-centered comparative clinical effectiveness research that generates evidence to help patients, caregivers, and the broader health-care community make informed health-care decisions. Several new funding announcements will open on December 2. Learn more about requirements and apply.
The National Health Council Launches PXI to Put Patients at the Center of Health Innovation
The National Health Council has announced the launch of the PXI: Patient Experience + Innovation Center, a national initiative designed to ensure patients and caregivers play a central role in shaping artificial intelligence (AI) and digital health technologies across the health ecosystem. PXI serves as a patient-powered national platform that brings together patients, innovators, and technology leaders to ensure digital health tools and AI are developed and adopted in a manner that truly reflects patient priorities, experiences, and outcomes.
Critical Path Institute: Rare/Orphan and Pediatric Disease Programs 2025 Webinar Series
The Critical Path Institute will hold a webinar, “From Vision to Reality: 6 Years of RDCA-DAP, Driving Drug Development Solutions and Innovations in Data Sharing,” on December 11 at 12 p.m. EST as part of its Rare/Orphan and Pediatric Disease Programs 2025 Webinar Series. This session will present an overview of Rare Disease Cures Accelerator-Data and Analytics Platform’s (RDCA-DAP) accomplishments and highlight how the initiative promotes data sharing, creates a growing database for rare diseases, fosters a collaborative data ecosystem with external partnering platforms, and facilitates drug development through its public data and analytics portal. Register for this webinar.