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TRAIN Newsletter — June 2023

Newsletter
TRAIN Newsletter — June 2023

In This Newsletter

News from FasterCures
TRAIN Organization Updates
News You Can Use

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

Complete the Research Partnership Communities of Practice Interest and Preference Survey

FasterCures is considering creating new communities of practice (CoP) for organizations involved in our capacity-building efforts, including all The Research Acceleration and Innovation Network (TRAIN) organizations. These communities of participant-led virtual discussion groups would create opportunities for members to collectively discuss areas of challenge and need and share promising practices, strategies, and ideas to move progress forward. Please complete this survey by June 9, 2023, to help us determine if these kinds of opportunities would be of interest and formulate an experience that best aligns with the needs of the patient-organization community.

View Recording and Summary of Webinar on Building More Diverse and Inclusive Patient Organizations and Communities

On April 3, FasterCures held a TRAIN webinar on “Building More Diverse and Inclusive Patient Organizations and Communities.” The webinar included speakers from our partners at the Crohn’s & Colitis Foundation, the Lupus Research Alliance, and the Foundation for Sarcoidosis Research. The presentations offered lessons and best practices that can be modeled by other patient organizations hoping to improve their diversity and representation in research. View the webinar recording and summary.

Stream Sessions from Milken Institute’s 26th Annual Global Conference

From April 30 to May 3, 2023, the Milken Institute held its 26th annual Global Conference at the Beverly Hilton. This year’s conference theme, “Advancing a Thriving World,” brought together thought and industry leaders from across the spectrum to tackle the most pressing challenges of our time, from gene therapies to innovation and access in medicine and using real-world evidence and AI in health. Watch session recordings for free on our website.

FasterCures Hosted ‘Research Partnership Maturity Model Interactive Workshop’

On March 21, 2023, FasterCures held the inaugural “Research Partnership Maturity Model Interactive Workshop” in Los Angeles, California, for participating attendees to apply the Research Partnership Maturity Model and think about how to grow strategically as an organization. Read more about the workshop on LinkedIn.

TRAIN ‘What’s New in Venture Philanthropy Webinar’ To Be Held in Late June 2023

Presenters with experience implementing venture philanthropy investing will share information on the latest approaches for utilizing this investment strategy, elaborate on their lessons learned, and share considerations for others considering expanding their use of this strategy. We have not yet determined a date for this event, but all TRAIN organizations will receive an invitation to attend once we finalize the details.

Save the Date for 2023 Future of Health Summit, Including Partnering for Patients Forum

Mark your calendars! This year’s Milken Institute Future of Health Summit will take place November 6–8, 2023, in Washington, DC. Partnering for Patients Forum will be included as a track at the three-day event. We will send more details and invitations to the TRAIN community soon. We hope to see you there!

TRAIN Organization Updates

Lupus Research Alliance Forms New Partnership with FDA

In late March, the Lupus Research Alliance formed a public-private partnership with the Food and Drug Administration (FDA), creating the Lupus Accelerating Breakthroughs Consortium (Lupus ABC). The program hopes to address the barriers preventing new therapies for lupus by bringing together patients, clinicians, researchers, federal agencies, and other groups.

One Mind Launches Accelerator to Supercharge Mental Health Startups

The One Mind Accelerator addresses the global mental health crisis by empowering founders with the tools (network, education, and capital) to build robust, scalable, and ethical companies that take innovations to market faster and with greater impact on people facing mental illness. The inaugural, in-person/virtual program supports 11 early-stage companies with a $100,000 investment and 10 weeks of intensive programming designed to help founders rapidly take their companies to the next level.

Focused Ultrasound Foundation Exploring Artificial Intelligence

The Focused Ultrasound Foundation recently launched the Machine Learning (ML) in Focused Ultrasound Acceleration Program. Through this program, the foundation is committed to increasing awareness of ML’s potential to optimize treatment outcomes and drive productive deployment within the focused ultrasound community. Check out their website to learn how they are developing knowledge on the ways artificial intelligence and ML can positively impact health care.

The Asthma and Allergy Foundation of America Expands Health Equity Program

The Asthma and Allergy Foundation of America announced the second round of awardees to be supported through the Health Equity Advancement and Leadership (HEAL) program. The initiative aims to drastically reduce health disparities in communities with the heaviest asthma and allergy burden by funding local interventions to build and support community-based programs tailored to at-risk populations.

News You Can Use

Rare Disease Endpoint Advancement Pilot Program Workshop: Novel Endpoints for Rare Disease Drug Development

On June 7 and 8, the FDA Center for Drug Evaluation and Research, the Center for Biologics Evaluation and Research, and the Duke-Margolis Center for Health Policy will host a sponsored virtual public workshop on the Rare Disease Endpoint Advancement (RDEA) Pilot Program and novel endpoint development for rare disease drug development. The workshop will discuss the RDEA Pilot Program, scientific and technical issues associated with developing study endpoints for rare diseases, and lessons learned from previous Prescription Drug User Fee Act meeting programs that can be applied to the RDEA Pilot Program. Register for the workshop.

Patient Engagement Synapse Launches the Fair Patient Engagement Planner

Patient Engagement Synapse has created the Fair Patient Engagement Planner to facilitate good practices in defining patient engagements and empower open and transparent dialogue on fair remuneration for patient engagement activities between the patient community and pharmaceutical industry. The tool operationalizes the harmonized Global Remuneration Principles and applies the Global Activity Expertise Frameworks.

NORD To Host Rare Diseases & Orphan Products Breakthrough Summit October 16–17

On October 16 and 17, National Organization for Rare Disorders (NORD) will host the Rare Diseases & Orphan Products Breakthrough Summit in Washington, DC. The summit will bring together key stakeholders in the rare disease community as well as more than 900 participants to share the latest updates on rare disease diagnosis, drug development research, patient engagement, public policy, and market accessibility of orphan products. Registration opens June 15, 2023.

New IQVIA Whitepaper on Prioritizing Expenditure for Maximizing Impact on Patient Communities

IQVIA recently published the white paper, “Making Best Bets: Prioritizing Expenditure for Maximizing Impact on Patient Communities,” focusing on medical research funding and how leaders prioritize investment of precious resources in a way informed by both the research landscape and patient views. Senior Director Kristin Schneeman of FasterCures was a participating member of the 2022 IQVIA Patient Advocacy Summit from which the white paper’s insights were formed.

Watch NCATS Alliance ‘Speeding the Process of Bringing New Treatments to Patients’ Webinar Recording

In a recent webinar with Manatt Health, health-care leaders discussed the barriers that must be overcome to ensure continued progress in the quest to discover and deliver new treatments to patients. They also shared their perspectives on the critical part the National Center for Advancing Translational Sciences (NCATS) has played in improving and speeding translational research—and the importance for all stakeholders to join together to support NCATS’ work and mission. Learn more about and join the NCATS Alliance.

Upcoming FDA Funding Opportunities for Rare Disease Research

Check out the FDA “Funding Opportunities for Rare Disease Research” web page for information on upcoming funding opportunities. Grants with approaching deadlines include “Clinical Studies of Orphan Products Addressing Unmet Needs of Rare Diseases” and “Efficient and Innovative Natural History Studies Addressing Unmet Needs in Rare Disease.”

Request for Proposals from ALS Breakthrough Research Fund

The Milken Institute Center for Strategic Philanthropy and Tambourine have released a request for proposals (RFP) focused on understanding the underlying mechanisms of amyotrophic lateral sclerosis (ALS). Research grants will be awarded to up to 10 ALS research grants, providing $300,000 in funding per year for up to two years. Letters of intent will be accepted until June 21, 2023, and full proposals are due September 1. Apply via the Milken Institute’s application portal for this funding opportunity.

Advancing Biomedical Research for Transparency & Patient Outcomes Summit

The Center for Biomedical Research Transparency is hosting their 6th annual Biomedical Transparency Summit on “Advancing Biomedical Research for Transparency & Patient Outcomes” on Friday, June 9, 2023. The summit is a multidisciplinary gathering dedicated to scientific transparency, research efficiency, combating publication bias, and enhancing patient outcomes. Register for the 2023 summit.

Upcoming Funding Opportunities from National Cancer Institute

The National Cancer Institute’s Small Business Innovation Research Development Center provides funding and non-funding support to small businesses and entrepreneurs developing novel cancer technologies. Check out their upcoming funding opportunities for 11 different contract topics for FY 2024.

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