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TRAIN Newsletter September 2021

Newsletter
TRAIN Newsletter — September 2021

In This Issue:

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

Milken Institute Global Conference to Be Held October 17–20, 2021

The Milken Institute Global Conference, an annual convening of global leaders in government, finance, health, academia, and philanthropy, will take place October 17–20, 2021, at The Beverly Hilton Hotel in Los Angeles. Centered on the theme of “Charting a New Course,” the event will examine the disruptions and innovations brought on by the global pandemic, social crises, and economic hardship. In-person gatherings and livestreaming sessions will reframe what it means to have a thriving future.

Mapping the Patient and Caregiver Journey for Cell and Gene Therapies

With dozens of new cell and gene therapies expected to be approved by the Food and Drug Administration in the coming years, ensuring these therapies benefit all the individuals for whom they are intended will be a complex task for providers, payers, and product developers. With this in mind, FasterCures sought to create a resource that could elucidate the challenges that patients and caregivers may confront during their care journey. Based on input collected during two workshops held in November 2020 and April 2021 and stakeholder interviews, FasterCures has developed a journey map that delineates many of the questions that arise for patients and caregivers when confronted with an option of a cell or gene therapy.

FasterCures Comments on Cures 2.0 Discussion Draft and NCATS ARPA-H Request for Information

In June, Representatives Diana DeGette and Fred Upton released a discussion draft of Cures 2.0 following the landmark 21st Century Cures Act biomedical innovation law. In Cures 2.0, there is language to establish the Advanced Research Projects Agency for Health (ARPA-H) housed within the National Institutes of Health (NIH). View FasterCures’ comment letter on the discussion draft and our response to the ARPA-H Request for information.

TRAIN Organization Updates

Sepsis Alliance Launches POWER the AMRevolution

Sepsis Alliance launched an educational campaign, POWER the AMRevolution, to address the lack of awareness surrounding antimicrobial resistance (AMR). Time is ticking in favor of creating more superbugs that put people at risk, especially those already vulnerable, for developing untreatable and life-threatening infections. This campaign discusses how antimicrobial resistance is a major public health crisis and actions that we can take to combat it.

Giusti Envisions Operation Warp Speed as Model for Cancer

Kathy Giusti, founder and chief mission officer of the Multiple Myeloma Research Foundation, published an article on her website, “Warp Speed to Cancer Cures—COVID Vaccine Should Be Our Model to Save More Lives.” With a renewed sense of inspiration after seeing the speed and innovation in the development of the COVID-19 vaccine, Giusti has a vision that this tenacity can be applied to treat cancer by de-risking application and commercialization of  transformative cancer treatments.

CureDuchenne Launches Link, a Centralized Data Hub

CureDuchenne launched Link, a centralized database that integrates patient data from biosamples, patient-reported data, clinical data, and genomic data to further Duchenne and Becker muscular dystrophy research. This platform is designed to facilitate a community-centric approach to participation in clinical trials, be widely accessible to researchers, and include patients’ experiences for a more comprehensive view of the diseases.

Long COVID-19 Alliance Founded

The Long COVID Alliance was co-founded by Solve ME in early 2021. This multistakeholder alliance includes researchers, private industry leaders, regulators, patient advocates, and more who are dedicated to educating policymakers and leveraging lessons learned to accelerate research and solidify their understanding of post-viral illness to reduce the continued burden on the US health-care system.

News You Can Use

Opportunity to Lend Your Support to ‘Ending the Diagnostic Odyssey Act of 2021’

Genetic Alliance has provided an opportunity to sign your support to a letter in support of the bill S.2022, “Ending the Diagnostic Odyssey Act of 2021,” which Senator Susan Collins has proposed. The bill aims to reduce the time patients and families wait for a rare disease diagnosis. This bill will allow states to conduct pilot programs via an increase in the Medicaid Federal Medical Assistance Percentage rate to provide whole genome sequencing clinical services for children on Medicaid with a disease suspected to have a genetic cause.

Register for the Global Genes Rare Patient Advocacy Summit

The Global Genes Rare Patient Advocacy Summit will take place September 27–29, featuring keynote speaker Fyodor D. Urnov, scientific director at the Technology and Translation Innovative Genomics Institute. This all-day event features interactive and educational events, meetings, and networking opportunities.

Register for the National Health Council 2021 Virtual Science of Patient Engagement Symposium

The theme of the National Health Council’s 2021 Science of Patient Engagement Symposium is “Achieving Trust in and Trustworthiness of Science.” This event will take place virtually October 13–14 and will feature presentations from leading experts in the field. There is also the opportunity to sign up for a pre-symposium workshop, “Health Literacy: A Three-Part Series to Support Better Communication.”

PCORI Proposed National Priorities Chart Bold Vision for PCORI’s Future

The Patient-Centered Outcomes Research Institute (PCORI) has made strides to create an informed health-care system with an ambitious strategic roadmap and National Priorities for Health. This proposal outlines future research funding and other initiatives.

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