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
Register for TRAIN Webinar on Implementing a Dynamic Venture Philanthropy Practice
You're invited to join TRAIN for the “Implementing a Dynamic Venture Philanthropy Practice” webinar on September 8, 2023, from 1 to 2 p.m. ET. In this webinar, we will hear from organizations that have successfully implemented a venture philanthropy practice to learn more about their approach to getting started, investment strategies, lessons learned, and potential considerations for other organizations hoping to implement similar practices. Register here to attend the webinar.
FasterCures Launches New Communities of Practice
FasterCures has launched new Communities of Practice (CoPs) for members of TRAIN and the Rare As One Mentorship Program to engage in peer discussions around the challenge and need areas and share promising practices and strategies. Community topics include the four domain areas represented in the Research Partnership Maturity Model (i.e., Expertise, Patients, Money, and Relationships). Kick-off meetings for the communities will take place in September and October 2023. If you are interested in participating in this opportunity and have not yet signed up, please email [email protected].
Milken Institute Future of Health Summit November 6–8 in Washington, DC
The 2023 Milken Institute Future of Health Summit will take place November 6–8 in Washington, DC. The Summit will feature top experts in health discussing the most pressing challenges and opportunities in our health system. More details and invites will be going out to the TRAIN community soon.
Milken Institute Advances in Science Webinar featuring NIA Director Richard J Hodes
On August 15, Milken Institute held an Advances in Science webinar on “Advances Build Momentum: A Decade of Progress in Alzheimer’s Disease Research.” During this webinar, Richard J Hodes, MD, director of the National Institute on Aging (NIA) at the National Institutes of Health (NIH), discussed the NIA’s work and notable scientific advances in several areas of Alzheimer’s research, including genetics, biomarkers, risk factors, interventions, and clinical studies. View the Advances in Science Webinar recordings.
TRAIN Organization Updates
Susan Love of the Dr Susan Love Research Foundation Has Passed Away
Susan Love, MD, chief visionary officer of the Dr Susan Love Research Foundation, passed away on July 2, 2023. Love led the foundation since 1995 and was known for her work advocating for the better treatment of women in the medical establishment and a patient-first approach. She was a pioneer in breast cancer research and passed away from recurrent leukemia. Read more about Love’s career and impact.
TRAIN Welcomes Three New Member Organizations
FasterCures congratulates the following organizations on their acceptance into TRAIN!
FDA Approves Transformational Treatment for Dystrophic Epidermolysis Bullosa
The Food and Drug Administration (FDA) recently approved the first topical gene therapy treatment for dystrophic epidermolysis bullosa (DEB), a devastating pediatric skin disease that affects children around the world. Using its venture philanthropy model, EB Research Partnership invested in Krystal Biotech by way of a private placement after Krystal Biotech’s initial public offering in 2017.
Muscular Dystrophy Association Announces Innovative Advocacy Grants Program
The Muscular Dystrophy Association announced an innovative grant model providing funding to support key public policy and advocacy initiatives in coordination with other organizations and partners. These collaboration-focused grants aim to accelerate the development and delivery of meaningful treatments, health care, and life opportunities for the neuromuscular disease community. The application deadline is September 30, 2023.
News You Can Use
Preclinical Proof of Concept Studies for Rare Disease Funding Opportunity through NIH
The NIH has a new funding opportunity, “Preclinical Proof of Concept Studies for Rare Disease,” providing funding for the conduct of efficacy studies in an established rare disease preclinical model to show that a potential therapeutic agent justifies further development. The first due date for this opportunity is October 2, 2023.
Watch IQVIA Webinar Recording on the Role of Patient Organizations to Accelerate Innovative Data Research to Better Serve their Patient Communities
On May 18, IQVIA hosted a webinar on the role of patient organizations in accelerating innovative data research to serve their patient communities better. The webinar examined the promise of artificial intelligence and machine learning (AI/ML), patient organizations' role in supporting AI/ML and data linkage programs, how data linkage can improve existing data, and how to source funding to enable these programs. Access the recording by registering on their website.
2023 NORD Breakthrough Summit Taking Place October 16–17 in Washington, DC
The NORD Rare Diseases & Orphan Products Breakthrough Summit is taking place at the Marriott Marquis in Washington, DC, on October 16–17. This event will bring together rare disease advocates, researchers, physicians, and pharma/bio executives for a discussion on timely topics, including the impact of the Inflation Reduction Act on the rare community, moving DEI from good intentions to effective action, and the potential impact of drug repurposing, among other topics.
Join Global Genes for the RARE Health Equity Forum in San Diego September 18–19
The Global Genes RARE Health Equity Forum is a two-day event that will take place in San Diego, California, September 18–19, 2023. The event will provide attendees with actionable tools and insights to support underserved and underrepresented patients. The event will share a variety of lived experiences, including Indigenous, LGBTQIA+, adoptee families, Hispanic, African American/Black, Mennonite, and the disability community.
Register for Research!America’s 2023 National Health Research Forum
Join Research!America for its 2023 National Health Research Forum on September 19–20. Day one will be a virtual discussion, and day two will occur in Washington, DC. The forum will highlight advances against deadly and debilitating health threats, approaches to remaining challenges, and opportunities to leverage success to accelerate progress.
ICHOM Seeks Input on Patient Charter
The International Consortium for Health Outcomes Measurement (ICHOM) is a nonprofit organization working to define the health outcomes that matter most to patients and is currently seeking input from patients and people with disabilities about its Patient Charter. The ICHOM Patient Charter "articulates ICHOM's commitments to the patient community and the rights and empowerment actions that patient representatives are entitled to when co-leading research and other initiatives with ICHOM. It will serve as a framework for fair partnerships to ensure the expertise of patient representatives is acknowledged and integrated at all stages of ICHOM initiatives and is a step in our journey towards being a stronger ally for the patient community going forward.” To provide feedback on its patient charter, please complete the following 20-30 minute survey.
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