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Expanding Horizons: Launching a Rare Disease Nonprofit Amid Government Funding Challenges
Geri Landman, MD, MPH, cofounder and chair of Moonshots for Unicorns, talks about how the lack of government funding for PGAP3 research led her to take it upon herself to work toward a cure for her daughter.
In this installment of the "Expanding Horizons" series, Geri Landman, MD, MPH, cofounder and chair of Moonshots for Unicorns, pediatrician at Palo Alto Foundation Medical Group, addresses the challenges of insufficient government and pharmaceutical funding for rare diseases, and how Moonshots for Unicorns came to be as a response to those challenges.
Driven by the urgent need for treatments, especially for conditions like PGAP3, the nonprofit organization seeks to pioneer a pathway for single-gene conditions, with the ultimate goal of making research more accessible and affordable for families. Landman also advocates for a decentralized approach to government-sponsored research, proposing a model where funds directly empower existing patient organizations to accelerate the pace of finding cures for rare diseases.
According to Landman, "If government rare disease funding wants to be more useful to rare disease families, it has to pick up the pace."
Check out the first part of the "Expanding Horizons" feature series here. To learn more about Moonshots for Unicorns, visit www.moonshotsforunicorns.org
Dr Kathy Zackowski Discusses the Importance of Rehabilitation Research and Trials in MS
April 26th 2024Kathy Zackowski, PhD, National MS Society, expresses the inherent value of quality rehabilitation trials for broadening clinical understandings of multiple sclerosis (MS) and bettering patient outcomes.
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Examining Low-Value Cancer Care Trends Amidst the COVID-19 Pandemic
April 25th 2024On this episode of Managed Care Cast, we're talking with the authors of a study published in the April 2024 issue of The American Journal of Managed Care® about their findings on the rates of low-value cancer care services throughout the COVID-19 pandemic.
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Empowering Community Health Through Wellness and Faith
April 23rd 2024To help celebrate and recognize National Minority Health Month, we are bringing you a special month-long podcast series with our Strategic Alliance Partner, UPMC Health Plan. In the third episode, Camille Clarke-Smith, EdD, MS, CHES, CPT, discusses approaching community health holistically through spiritual and community engagement.
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Kaiser Permanente was hit by a data breach in mid-April, impacting 13.4 million health plan members; GlaxoSmithKline (GSK) sued Pfizer and BioNTech for allegedly infringing on its messenger RNA technology patents in the companies’ COVID-19 vaccines; the CDC announced the first-known HIV cases transmitted via cosmetic injections.
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Mental Health Diagnoses, Care Challenges Rise Among US Youth, Report Finds
April 26th 2024While behavioral health care utilization has been rising, the treatment landscape has been worsening. New findings show that 20% of youths did not receive any form of treatment within 3 months of their initial behavioral health diagnosis.
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