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News 2021
December 20, 2021
Global Genes Releases Platforms of Hope Report
This report is the culmination of a year-long multimedia reporting series in collaboration with the National Institutes of Health with the goal of helping the rare disease community understand emerging issues of genetic medicines, the challenges of moving these from the lab to the patient, and the issues involving equitable access to potentially curative therapies.
November 4, 2021
RARE-Xtra Podcast: Reinventing the Consent Process to Make It Patient-Centric
Before patients contribute their medical information to a research study, they must work through a consent agreement. These documents can be long, difficult to understand, and overwhelming for research participants to complete. Often consent agreements are crafted to serve the legal needs of the institutions conducting the research and fail to contemplate or allow for the future use of data beyond the immediate intended use. The consumer health technology platform Ciitizen and the nonprofit rare disease data platform provider RARE-X, have each sought to reinvent the consent process to make it patient-centric. We spoke to Deven McGraw, chief regulatory officer for Ciitizen and Vanessa Vogel Farley, R&D strategy lead for RARE-X, about the consent process, why it was necessary to reinvent it, and what a patient-centric consent process looks like.
November 4, 2021
A Patient-Centric Approach to Consent
The white paper shows how the RARE-X consent and governance processes capitalize on advances in information technology, allowing for flexibility. Most importantly, it recognizes patients as owners of their data and gives them, rather than a researcher, patient organization, or corporation, the power to determine who has access to their data. The paper draws from the insights of Vanessa Vogel Farley, research & data governance lead for RARE-X, and data governance expert, Joy Pritts, Esq.
United Soybean Board Awards $1 Million to Amfora to Continue Development of High-Protein Soy
SAN FRANCISCO, Aug. 09, 2021 (GLOBE NEWSWIRE) -- The United Soybean Board awarded $1 million to Amfora, Inc., a biotechnology company that is applying gene editing to sustainably feed the planet, to continue the development of soybean varieties with increased protein content.
July 21, 2021
Amfora Expands Series B Venture Round with New Investment from BayWa
SAN FRANCISCO, July 21, 2021 (GLOBE NEWSWIRE) -- Amfora, Inc., a biotechnology company that is using gene editing to increase the protein density of soybean and other crops to fuel the plant-based protein revolution, announced an expansion to its Series B round to a total of $7 million with new investment from the global player and stock listed company BayWa AG.
July 9, 2021
Agenus Acquires 120 Acres in the Heart of the California Biomanufacturing Center in Vacaville
VACAVILLE, Calif., July 09, 2021 (GLOBE NEWSWIRE) -- Agenus Inc. has purchased 120-acres in Vacaville’s California Biomanufacturing Center from housing developer A.G. Spanos, a transaction that represents a major advance in the city’s plans to expand its biotechnology footprint and solidify itself as a global center for biomanufacturing.
March 23, 2021
Amfora Raises $6 Million with Investment from Leaps by Bayer and Spruce Capital Partners
SAN FRANCISCO, March 23, 2021 (GLOBE NEWSWIRE) -- Amfora, Inc., a biotechnology company that is using gene editing to increase the protein density of soybean and other crops to fuel the plant-based protein revolution, announced that Leaps by Bayer and Spruce Capital Partners invested $6 million in its Series B financing round.
March 1, 2021
RARE-X Issues White Paper on Enabling the Future of Cell & Gene Therapies through Non-Proprietary Patient-Owned Data Collection
This paper explores the primary issues and requirements for data gathering that cell and gene therapy developers face. It also considers solutions, and the role a standardized non-proprietary data collection platform, such as RARE-X, can play in addressing these challenges.
Global Genes Issues NEXT 2021 Report, Exploring Trends to Watch in Rare Disease
ALISO VIEJO, Calif.--(BUSINESS WIRE)--Global Genes, a leading rare disease patient advocacy organization, today released NEXT 2021: A Time for Resilience and Ingenuity report, highlighting forward-looking developments, trends, and progress across the rare disease landscape.
February 15, 2021
Bioverge Launches The Bioverge Podcast
The Bioverge Podcast, hosted by healthcare investor Neil Littman, focuses on the intersection of bio + tech, and the entrepreneurs, investors, and industry leaders who are transforming healthcare to bring science fiction to life. Levine Media Group is producing the podcast.