Less Than Half of U.S. States Have a Rare Disease Advisory Council and This Needs to Change
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Less Than Half of U.S. States Have a Rare Disease Advisory Council and This Needs to Change

Guadalupe Hayes-Mota has worked for Biogen, Ultragenyx, Amgen, and GSK. He was the prior UCLA Health Director. Additionally, he is a member of the Massachusetts Rare Disease Advisory Council. He…

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PicnicHealth and Komodo Health Have Combined Their Data to Better Serve Multiple Sclerosis and Hemophilia Patients

Komodo Health and PicnicHealth have just announced that they have partnered together in effort to combine their data and better serve patients. This data will then be made accessible to…

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March is Bleeding Disorders Awareness Month: Spreading Bleeding Disorders Awareness
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March is Bleeding Disorders Awareness Month: Spreading Bleeding Disorders Awareness

March is recognized each year as Bleeding Disorders Awareness Month, an event meant to help spread awareness about bleeding disorders among the general public and in the medical community. Bleeding…

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BioMarin Holds Clinical Study to Determine Antibodies that Might Impact Gene Therapy
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BioMarin Holds Clinical Study to Determine Antibodies that Might Impact Gene Therapy

Last month, biotechnology company BioMarin sought approval for an investigational gene therapy (valoctocogene roxaparvovec) for patients with hemophilia A. However, their approval was denied. Instead, the company was told that…

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Recall of Bleeding Disorder Drug Leaves Patients with Unanswered Questions
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Recall of Bleeding Disorder Drug Leaves Patients with Unanswered Questions

According to a story from hemophilia.org, the drug company Ferring Pharmaceuticals issued a recall of the nasal spray drug desmopressin (marketed as Stimate) on July 21st, 2020. This product is…

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World Federation of Hemophilia’s Virtual Summit

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The World Federation of Hemophilia's Virtual Summit: Connecting the Global Bleeding Disorders Community June 15-19, 2020 In light of the cancellation of WFH's World Summit due to the ongoing coronavirus/COVID-19…

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