Clinical Trial Updates for Achondroplasia and Hemophilia A!
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Clinical Trial Updates for Achondroplasia and Hemophilia A!

BioMarin has just released an update on their achondroplasia and hemophilia clinical trials. Exciting things are in the works! Achondroplasia Update Achondroplasia causes short stature. A phase 3 trial working to…

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Preliminary Data from a Phase 1/2 Study of a Gene Therapy for Haemophilia A has been Shared
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Preliminary Data from a Phase 1/2 Study of a Gene Therapy for Haemophilia A has been Shared

Sangamo Therapeutics has shared details of their preliminary data from a clinical trial of the investigational drug SB-525 in patients with Haemophilia A. For more detailed information, you can read…

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Hemophilia Doesn’t Just Affect Men, Let’s Stop Talking like It Does
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Hemophilia Doesn’t Just Affect Men, Let’s Stop Talking like It Does

Hemophilia can affect anyone. Let’s make a few things clear: Women are carriers of hemophilia and pass the gene, but men determine the child’s gender. It’s not all on you,…

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Tips for a New Hemophilia Patient and New Caregiver: Reporting from the WFH Congress
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Tips for a New Hemophilia Patient and New Caregiver: Reporting from the WFH Congress

To the patient: Accepting your diagnosis doesn’t mean you can’t be mad about it. It simply means you understand that the reality of your life has changed and you know…

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A Letter to Parents on Transitioning from Pediatric to Adult Care in Hemophilia: Reporting from the WFH Congress
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A Letter to Parents on Transitioning from Pediatric to Adult Care in Hemophilia: Reporting from the WFH Congress

Dear Parents, You need to understand that you are taking on a completely new role in your child’s life. You will no longer be controlling their hemophilia for them. It’s…

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Why We Need to Focus on Adherence, Not Compliance: Reporting from the WFH Congress
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Why We Need to Focus on Adherence, Not Compliance: Reporting from the WFH Congress

We often hear the term noncompliance when talking about patient-doctor relationships for individuals with hemophilia. In essence, it means the hemophilia patient hasn’t done what the doctor has asked them…

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A Haemophilia A Treatment has Been Shown to Help More Patients Than Previously Thought
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A Haemophilia A Treatment has Been Shown to Help More Patients Than Previously Thought

A drug called Hemlibra that is currently only approved for treating a subset of patients with haemophilia A has been found to be effective for wider use, reports Hemophilia News…

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Patient Deaths While Taking Hemlibra Have Been Linked to Other Causes, Investigators Say
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Patient Deaths While Taking Hemlibra Have Been Linked to Other Causes, Investigators Say

According to a story from biopharmadive.com, the pharmaceutical company Roche is reporting a total of five deaths of patients with hemophilia A that have taken the company's product Hemlibra. While…

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Sanofi Acquires Hemophilia Treatment Developer Bioverativ for $11.6 Billion
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Sanofi Acquires Hemophilia Treatment Developer Bioverativ for $11.6 Billion

A huge deal is underway as Sanofi looks to acquire Bioverativ for $11.6 billion with hope to enhance and strength their rare disease presence, reports Genetic Engineering & Biotechnology News.…

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After Two Decades, FDA Approves New Hemophilia Treatment
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After Two Decades, FDA Approves New Hemophilia Treatment

Big news for those with hemophilia! On Thursday, the FDA approved Hemlibra (manufactured by Genentech), a weekly self-injection for hemophilia A patients who have developed resistance to standard medicines for preventing…

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National Hemophilia Foundation’s 69th Annual Meeting Wrap-Up!
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National Hemophilia Foundation’s 69th Annual Meeting Wrap-Up!

Patient Worthy attended the National Hemophilia Foundation's 69th Annual meeting in Chicago and we are thrilled to report on some of the exciting new developments for patients with bleeding disorders.…

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Better Than a Bandaid: Hemophilia A Treatment is a Success!
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Better Than a Bandaid: Hemophilia A Treatment is a Success!

Bleeding is painful. It's not only painful, but probably worse, it's also just a nuisance and a hassle. Lucky for most of us, pressure, a bandaid, or, at worst, a…

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World Hemophilia Day Ignites Hemophilia Awareness and Explodes with Inspiration
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World Hemophilia Day Ignites Hemophilia Awareness and Explodes with Inspiration

I came across an interesting blog about World Hemophilia Day (WHD) which was April 17th, 2017. It’s an interesting read, and fairly simple, one every woman should know about for inspiration,…

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