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Jan 24
Hands of different people outstretched into the air with the continents of earth on top

Building an International Patient Registry Webinar–with Pulse Infoframe

https://www.youtube.com/watch?v=IMIYYUJmNNM Patient registries are centralised databases that collect medical information about patients with a particular condition or group of conditions. Patient registries are often particularly valuable for rare diseases, especially international registries as they allow national boundaries to be transcended to capture information about scattered patient populations. This webinar shares... read more →
Dec 08
Oct 16

Book Release: Chasing My Cure

We are excited that Chasing My Cure: A Doctor's Race to Turn Hope Into Action is NOW AVAILABLE everywhere books are sold! The University of Pennsylvania’s Dr. David Fajgenbaum, Pulse Infoframe friend and collaborator and principal investigator of the ACCELERATE registry, wrote Chasing My Cure to share lessons learned about... read more →
Oct 16
Sep 09

Dr. David Fajgenbaum’s book “Chasing My Cure: A Doctor’s Race to Turn Hope Into Action” available now for pre-order

We’re excited to share that Dr. David Fajgenbaum, a friend and collaborator of Pulse InfoFrame and PI of the ACCELERATE registry which is powered by Pulse, is sharing his amazing story of discovering a drug to treat his rare disease, which is extending his and other #CastlemanDisease patients’ lives. His book, Chasing My... read more →
Jul 22

Immunocore and Pulse Infoframe, Inc. Partner with Leading Academic Institutions to Launch First Global Patient Registry for Uveal Melanoma

Patient-reported data will help inform research in rare form of eye cancer Immunocore Limited, a leading T cell receptor biotechnology company, and Pulse Infoframe, Inc. (Pulse), a data aggregation and analytics company, today announce plans to support the first global patient registry in uveal melanoma (UM), a rare and aggressive... read more →
May 31
Graphic of futuristic digital hologram of world with hands on either side

Pulse Infoframe Around the World

Here are a few highlights of our travels from the past few months. Dr. Durhane Wong-Rieger (L), President of the Canadian Organization for Rare Disorders (CORD), and our Dr. Femida Gwadry-Sridhar (R). Pulse Infoframe has just returned from the Great Plains Rare Disease Conference in Sioux Falls, spoken at Patients... read more →
May 30

Pulse Infoframe Clients in the News

Several of our clients have celebrated some huge successes this season. Take a look! Simon’s Heart Since 2011, Simon's Heart has advocated for the Sudden Cardiac Arrest Prevention Act. In May, Georgia and West Virginia became the 13th and 14th states, respectively, to pass the Sudden Cardiac Arrest Prevention Act,... read more →
May 30
Pin holding up a note that says Welcome Aboard on cork bulletin board

Pulse Infoframe Welcomes New Staff

Our staff has grown in recent months as we help more organizations use real world evidence to find effective treatments for rare diseases. Paul Ferraiolo: Chief Innovation Officer Paul brings over 30 years’ experience to Pulse Infoframe. His previous experience includes Chief Architect of the Oracle Cancer Research Cloud initiative,Chief... read more →
May 30