Contact
Daniel Levine
Principal
(510) 280-5405
danny@levinemediagroup.com
December 15, 2022
RARE-Xtra/Podcasts: An Open Science Data Challenge to Address Rare Neurodevelopment Diseases
This spring, RARE-X will kick off Xcelerate RARE: A Rare Disease Open Science Data Challenge. For this inaugural challenge, researchers and data scientists will work in collaborative and competitive environment to use patient-provided data to solve research questions focused on rare pediatric neurodevelopmental diseases. More than 44 rare disease communities represented by more than 70 patient advocacy groups are participating in the challenge and patients and their families affected by these conditions are actively loading their health data to the RARE-X data platform to enable researchers to make discoveries. We spoke about the open science data challenge with senior director of scientific programs for RARE-X Karmen Trzupek, chief scientific officer of the children’s tumor foundation Salvatore La Rosa, and section head of medical informatics for Genentech Andrew Nguyen. The three discussed open science challenges, how they work, and what RARE-X hopes to accomplish through this event.
October 12, 2022
California Biomanufacturing Center Creates a National Network to Advance the Bioeconomy in the United States
VACAVILLE, Calif., Oct. 12, 2022 (GLOBE NEWSWIRE) -- The California Biomanufacturing Center (CBC) today launched the BioProcess to Product (BioP2P) Network, a program to accelerate the transformation of manufacturing in the United States for the growing bioeconomy.
June 7, 2022
The Power of Being Counted
The Power of Being Counted Report uncovers rare diseases that were previously uncounted, unrecognized, and therefore, below the radar of clinical research teams working to discover new treatments. It includes insights from more than 20 notable organizations and individuals in the rare disease community. In addition to the analysis, the report outlines steps patient communities and researchers can take to share data and published research to ensure diseases are entered into knowledge bases to enable the discovery and development of better treatment and support for their diseases.
June 7, 2022
RARE-Xtra Podcast: The Power of Being Counted
For more than a decade, governments, nonprofits, and industry organizations involved in rare disease have stated as a matter of fact that there are 7,000 rare conditions or estimated the number to be between 5,000 to 8,000. The sources of these estimates are challenging to identify, given the circular nature of citations among groups repeating these figures. What’s more, these estimates have remained static even though nearly 300 new rare genetic diseases are added to principal knowledge bases each year. In an effort to develop a true count of rare conditions, RARE-X recently completed a research project that found the actual number is approaching 11,000. We spoke to research lead and Alexion Senior Director of Data Science Sebastien Lefebrve, Vice President of Patient Experience for Alexion Wendy Erler, and RARE-X CEO Charlene Son Rigby, about the new paper “The Power of Being Counted, the significance of its findings, and what the implications are for patient communities. An editor’s note: since recording this podcast, the authors of the RARE-X study have updated their work and revised the total number of rare diseases they identified to 10,867.
February 23, 2022
NEXT 2022: Redefining the Possible
Global Genes, a leading rare disease patient advocacy organization, today released its NEXT 2022: Redefining the Possible report, an annual reflection on the status of innovation and progress in rare diseases, including a comprehensive collection of data, studies and key findings published throughout 2021 from leading global rare disease stakeholders outlining advancements in rare diseases and what comes next.