Global Genes

Building awareness and communities to support and find treatments for Rare Diseases

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  • About Us
    • Who We Are
    • Global Genes Team
    • Board of Directors
    • Medical & Sci. Advisory Board
    • Press Releases
    • Press Kit
    • Audited Financials and IRS Forms
    • 2016 Year in Review
    • 2015 Annual Review
    • 2014 Annual Review
    • 2012 Annual Review
  • Get Involved
    • Blue Denim Genes Ribbon®
    • Wear That You Care®
    • Ways to Get Involved
    • #15forRare Campaign
  • Supporters
    • RARE Foundation Alliance
    • RARE Corporate Alliance
    • RARE Supporters
    • Youth and Young Adults
  • Partners
    • Chive Charities
    • The Mighty
    • Make-A-Wish®
    • SERMO
    • Behind the Mystery
    • RARE University
  • Events
    • 2018 Events Calendar Overview
    • 2018 RARE Patient Advocacy Summit
    • RARE on the Road
    • Rare Patient Advocacy Symposium
    • World RARE Disease Day
    • RARE Carousel of Possible Dreams
    • Denim Dash® Virtual 5k
    • RARE Meetups
    • RARE in the Square
    • UK Symposium
  • Resources
    • RARE Patient Impact Grant
    • David R. Cox Scholarship
    • Drug Development Roadmap
    • Drug Development White Paper
    • RARE Facts
    • RARE List
    • RARE Toolkits
    • RARE Webinars
    • RARECast Podcasts
    • RARE Documentaries
    • Rare Disease Impact Report
  • Give
  • Contact
  • RARE Daily
  • Store
  • About Us
    • Who We Are
    • Global Genes Team
    • Board of Directors
    • Medical & Sci. Advisory Board
    • Press Releases
    • Press Kit
    • Audited Financials and IRS Forms
    • 2016 Year in Review
    • 2015 Annual Review
    • 2014 Annual Review
    • 2012 Annual Review
  • Get Involved
    • Blue Denim Genes Ribbon®
    • Wear That You Care®
    • Ways to Get Involved
    • #15forRare Campaign
  • Supporters
    • RARE Foundation Alliance
    • RARE Corporate Alliance
    • RARE Supporters
    • Youth and Young Adults
  • Partners
    • Chive Charities
    • The Mighty
    • Make-A-Wish®
    • SERMO
    • Behind the Mystery
    • RARE University
  • Events
    • 2018 Events Calendar Overview
    • 2018 RARE Patient Advocacy Summit
    • RARE on the Road
    • Rare Patient Advocacy Symposium
    • World RARE Disease Day
    • RARE Carousel of Possible Dreams
    • Denim Dash® Virtual 5k
    • RARE Meetups
    • RARE in the Square
    • UK Symposium
  • Resources
    • RARE Patient Impact Grant
    • David R. Cox Scholarship
    • Drug Development Roadmap
    • Drug Development White Paper
    • RARE Facts
    • RARE List
    • RARE Toolkits
    • RARE Webinars
    • RARECast Podcasts
    • RARE Documentaries
    • Rare Disease Impact Report
  • Give
  • Contact
  • RARE Daily
  • Store

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Stories of Hope

ICER Says Roche’s Hemophilia A Therapy Improves Health While Lowering Costs

ICER Says Roche’s Hemophilia A Therapy Improves Health While Lowering Costs

April 17, 2018 By Daniel S. Levine Leave a Comment

Rare Daily Staff The Institute for Clinical and Economic Review, an independent, nonprofit that analyzes the cost-effectiveness of therapeutics, issued a report that found Roche’s Hemlibra delivered health benefits for patients with hemophilia A with inhibitors and that drug lowers overall costs of treatment compared…Continue Reading

Why Patient Groups Shouldn’t Dismiss Report on Pharma Influence

Why Patient Groups Shouldn’t Dismiss Report on Pharma Influence

April 16, 2018 By Daniel S. Levine Leave a Comment

Earlier this month, Kaiser Health News launched “Pre$cription for Power,” a database that tracks Big Pharma contributions to patient advocacy organizations along with a report about the corrupting influence of this money. The report found that 14 of the largest pharmaceutical companies provided a total…Continue Reading

When “Undiagnosed” Is Your Diagnosis

When “Undiagnosed” Is Your Diagnosis

April 13, 2018 By Daniel S. Levine Leave a Comment

Before most rare disease patients have a name to give their condition, they go on a diagnostic odyssey than can take years and usually involves multiple specialists. For some patients, the answer never comes. In the absence of a diagnosis, patients face significant challenges getting…Continue Reading

FDA Clears for Commercial Use Exemplar Genetics’ Animal Model for Rare Neurodegenerative Disease

FDA Clears for Commercial Use Exemplar Genetics’ Animal Model for Rare Neurodegenerative Disease

April 17, 2018 By Daniel S. Levine Leave a Comment

Rare Daily Staff The U.S. Food and Drug Administration cleared Intrexon subsidiary Exemplar Genetics’ ExeGen ATM MiniSwine model for commercial use as a research model of ataxia telangiectasia, a rare, inherited, neurodegenerative disease. Mutations in the ataxia telangiectasia gene lead to the multisystemic disorder AT.…Continue Reading

Ultragenyx and Kyowa Kirin Win FDA Approval for Crysvita to Treat XLH

Ultragenyx and Kyowa Kirin Win FDA Approval for Crysvita to Treat XLH

April 17, 2018 By Daniel S. Levine Leave a Comment

Rare Daily Staff The U.S. Food and Drug Administration granted approval to Crysvita, Ultragenyx and Kyowa Kirin International’s treatment of children and adults with X–Linked Hypophosphatemia, a rare and progressive genetic skeletal disorder. People with XLH can experience abnormal bone formation, bone pain, lower than…Continue Reading

FDA Approves Rigel’s Treatment for Chronic Immune Thrombocytopenia (ITP) in Adult Patients

FDA Approves Rigel’s Treatment for Chronic Immune Thrombocytopenia (ITP) in Adult Patients

April 17, 2018 By Daniel S. Levine Leave a Comment

Rare Daily Staff The U.S. Food and Drug Administration approved Rigel Pharmaceuticals’ Tavalisse for the treatment of adults with chronic immune thrombocytopenia, a rare disorder in which the body’s immune system attacks the body’s own blood platelets. Common symptoms of ITP include excessive bruising, bleeding…Continue Reading

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