London, Canada and Tucson, Ariz., U.S. (September 29, 2021) – Critical Path Institute (C-Path) and Pulse Infoframe announced today their collaboration to advance technologies and tools to further rare disease research and drug development. In addition, both organizations will support the creation of more streamlined and transparent informed consent processes... read more →
Sep
30
Sep
08
Breaking Down Silos to Accelerate Research for Rare Kidney Disease London, Canada; Scottsdale, United States (September 7, 2021)—Alport Syndrome Foundation and Pulse Infoframe are pleased to announce that the advocacy group for Alport syndrome, a rare kidney disease, will be joining the National Kidney Foundation (NKF) Patient Network. Powered by... read more →
Sep
08
https://www.youtube.com/watch?v=Thz9e7zxwpk Patient advocate and CATS Foundation co-founder Daniel Lewi shares his insights on the importance of a patient registry.
Sep
08
https://www.youtube.com/watch?v=s1OvC-Xap-A Patient advocate and CATS Foundation co-founder Daniel Lewi shares his journey as a patient advocate.
Aug
12
August 12, 2021, London, Canada—PIP-UK is joining Rare Central, the rare disease platform powered by Pulse Infoframe, to create the UK Poland Syndrome Community Register. The PIP UK charity will unveil the project at its annual conference and family weekend away in the UK on August 14 and 15. This... read more →
Jul
19
https://www.youtube.com/watch?v=mGtwX6CcKHs Drug Repurposing for Rare Diseases 2021, June 15-16. Brought to you by Findacure.
Jun
24
Pulse Infoframe specializes in generating real-world data (RWD) that can be used to create real-world evidence (RWE). In this article, we will discuss how pharma companies can access real-world evidence for drug development, starting with RWD collected through our healthie™ platform. How Does Pulse Infoframe Obtain Real-World Data? Pulse Infoframe... read more →
Jun
24
London, Canada; Rhode Island, United States (June 24, 2021) - QualityMetric and Pulse Infoframe announced today their partnership and vision to create the first scientifically validated rare disease instruments across conditions. Once deployed, these instruments will benefit not only rare disease patients and families, but also researchers and drug developers... read more →
Jun
20
https://www.youtube.com/watch?v=vwUBqCN1EP8 What is an international registry, and why is it important?
Jun
20
https://www.youtube.com/watch?v=awAYAgFhQDE Dr Femida Gwadry-Sridhar, Founder & CEO of Pulse Infoframe, will discuss the first global patient registry for uveal melanoma at the AOMA Summit (11am, 19 June). This registry hopes to pave the way for accelerated treatment advances.