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TRAIN Newsletter — February 2022

TRAIN Newsletter — February 2022

TRAIN eNews is delivered directly to organizations that take part in The Research Acceleration and Innovation Network (TRAIN). TRAIN is an affinity network of foundations interested in taking a more strategic and entrepreneurial approach—what some refer to as “venture philanthropy”—to their role as funders of medical research. TRAIN convenes dozens of forward-thinking foundations to learn from each other 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

Apply to Be a Mentor for the Rare As One Program!

The Rare As One Mentorship Program, a collaboration between the Chan Zuckerberg Initiative and FasterCures, is accepting applications from TRAIN organization leaders to be mentors. This is your chance to make a difference for an emerging nonprofit research leader in the rare disease space by helping them build a high-performing organization. Click here to learn more about the opportunity and apply by March 18, 2022.

FasterCures Toolkit: Foundations’ Role in Supporting Clinical Trial Innovation

Patient-driven foundations have been playing an increasingly active and important role in supporting clinical trials as well as the infrastructure to conduct trials in their conditions of interest. Access this toolkit containing webinar videos and linked resources to learn about which approaches are working to accelerate clinical research, what tools and resources are available, and how we can partner to be even more effective.

FasterCures Webinar: Antibiotic Resistance and Chronic Disease

FasterCures hosted a webinar featuring the challenges and potential solutions to the rising prevalence of antibiotic resistance and its implications for vulnerable people suffering from chronic diseases. This webinar discusses what the risks are to patients, how antibiotic resistance can impact our society and health systems, and what actions we can take to advocate for a deeper sense of urgency. You may watch a recording of the webinar or read a summary.

FasterCures Report: Achieving Health Equity

FasterCures released a report, Achieving Health Equity: An Action Plan to Address Diversity across Clinical Trials and Biomedical Research. The COVID-19 pandemic brought issues of inequity into starker focus as historically underserved communities suffered disproportionately. This disconnect is a product of history, insufficient representation, structural racism, systemic inequality, and a lack of sustained action and leadership in clinical research at the national level. This report presents both a tool for understanding the issues facing biomedical research and a concrete action plan with a clear vision.

Upcoming FasterCures Workshop: Ensuring Good Ideas Aren’t Lost in Translation

Patient-driven foundations have been playing an increasingly active and important role in supporting translational research from preclinical development to clinical implementation. There are many bottlenecks that impede the translational process and the risk for failure is high. FasterCures, in partnership with the National Center for Translational Sciences, will host a workshop where we will examine approaches to accelerate translational research, the expertise needed to move good ideas toward proof of concept and into the clinic, and how foundations can strategically engage in this process. Additional event details, including the workshop date and the workshop registration page, will become available in early March.

TRAIN Organization Updates

Michael J. Fox Foundation PPMI: The Study That Could Change Everything

The Michael J. Fox Foundation’s landmark study, Parkinson’s Progression Markers Initiative (PPMI), launched in 2010, has the power to alter the trajectory of Parkinson’s disease research to find better treatments and a cure. The linked newsletter describes the PPMI study, how people with and without Parkinson’s disease can get involved, how data will be used for Parkinson’s research, and how industry is using the study to advance drug development.

What We Know About Psoriasis and Heart Disease: National Psoriasis Foundation

The National Psoriasis Foundation made its largest single grant investment to study the association between psoriasis and cardiovascular disease. This effort is a part of the Psoriasis Prevention Initiative, which is an ambitious research initiative that aims to accelerate efforts to identify an intervention that will prevent the onset of psoriatic disease through a multi-institution, multi-disciplinary, team-based research network.

The AFTD Releases A Voice of the Patient Report

The Association for Frontotemporal Degeneration (FTD) released A Voice of the Patient report, combining qualitative data from its externally-led Patient-Focused Drug Development meeting and the quantitative data gathered from an FTD Disorders Registry survey. The survey includes input from over 1,750 people and describes the lived experience of FTD and patients’ experiences seeking and receiving treatments. This report concludes with shared priorities for the development of novel treatments.

News You Can Use

Chan Zuckerberg Initiative Releases Two Requests for Applications

The Chan Zuckerberg Initiative has launched two RFAs: Patient-Partnered Collaborations for Rare Neurodegenerative Disease and Patient-Partnered Collaborations for Single-Cell Analysis of Rare Pediatric Inflammatory Disease. Both RFAs are aimed at advancing the understanding of the fundamental science of rare diseases and providing funding to patient organization collaborators. Applications are due on May 22, 2022, and May 24, 2022, respectively.

EveryLife Foundation: Patient Involvement Guide in Rare Disease Therapy Development

The EveryLife Foundation has released Guide to Patient Involvement in Rare Disease Therapy Development, a new resource for biomedical R&D stakeholders, to optimize patient inclusion in rare disease product development efforts. This guide centers on the inclusion of the patient experience as specified by Food and Drug Administration guidance documents and is organized by eight topics containing considerations and resources to help patient foundations and sponsors advance patient engagement efforts. This webpage includes the guide, a partner toolkit, and a webinar that provides an overview of the guide.

The National Partnership for Women & Families Urges People to Choose Health Equity

The National Partnership for Women & Families has released new patient and family engagement (PFE) resources. The resources provide strong evidence of the multifaceted impact of PFE and offer lessons on building relationships with patients and families to improve health outcomes. The resources include a report and recommendations, a getting started toolkit, infographics, and a customizable advocacy presentation. The evidence shows why PFE is necessary to improve care quality, advance health equity, and optimize health outcomes.