Ep. 7: December 19th, 2016 - w/ special guests Jeremy Griffin, Rich Pezzillo, Michelle Kim & Bob Robinson

In this episode, Patrick reviews some recent headlines in our Trending Topics segment, shares some takeaways from the American Society of Hematology’s 2016 Annual Meeting during our Like, Share, Comment segment, and during a special Sit-Down segment, we hear from with Executive Directors of patient organizations and chapters from around the country on what 2016 was, and what 2017 could be. The good, bad and otherwise. All this and more on Episode 7 of BloodStream.

Sponsors for Episode 7:

Presenting Sponsor: Stop The Bleeding! (STB!) Link to STB! Website Supporting Sponsor: Entertainment to Affect Change (E2AC) Link to E2AC Website

Trending Topics:

Hemophilia News Today publishes articles on “Pain and pain management in hemophilia.” Link. DailyMail.com reports on, “How a blood test could save you [UK Women] from infertility.” Link Blood Journal publishes, “Patient Reported Outcomes to Assess Quality of Hemophilia Care in North India.” Link MASAC publishes four new recommendations. Link

Like Share Comment:    

My Life, Our Future (MLOF) reaches 5,000 patients enrolled. Link MLOF website: Link Video on MLOF: Link American Society of Hematology (ASH) Headlines of Interest: Alnylam Pharmaceuticals presents interim results from study of investigational, subcutaneously-administered fitusiran (for patients with hemophilia A or B who also have inhibitors). Link CSL Behring presents Phase III trial results from IDELVION (long-acting recombinant product for hemophilia B). Link Novo Nordisk presents data from SMART-7 study of NovoSeven. Link Sanagmo BioSciences presents data from SB-525, a gene therapy treatment currently being studied in mice and non-human primates. Link Spark Therapeutics presents preliminary results from investigational, gene therapy agent SPK-9001 intended for the treatment of people with hemophilia B. Link University of Pennsylvania scientists successfully cure mice with hemophilia B using CRISPR. Link Octapharma announces two clinical trials studying how Wilate may be used to treat people with hemophilia A. Link World AIDS Day at the National AIDS Memorial Grove Honors the Hemophilia Community. Video of Powering Through panel featuring NHF CEO Val Bias, HFA CEO Kimberly Haugstad, COTT President Carl Weixler, and The Grove’s ED John Cunningham. Link NHF CEO Val Bias letter regarding HIV/AIDS Memorial. Link

 

Sit-Down Segment:

Jeremy Griffin, from the New York City Hemophilia Chapter Rich Pezzillo, from the New England Hemophilia Chapter Michelle Kim, from the Southern California Hemophilia Chapter Bob Robinson, from the Bleeding Disorders Alliance of Illinois

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