ArmaGen Announces Collaboration with Shire to Develop Treatment for Hunter Syndrome

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ArmaGen, a privately held biotechnology company focused on developing revolutionary therapies to treat severe neurological disorders, announced today that it has entered into a worldwide licensing and collaboration agreement with Shire plc to develop AGT-182, an investigational enzyme replacement therapy (ERT) for potential treatment of both the central nervous system (CNS) and somatic … [more here...]

Upcoming Webinar: Using Successful Online Fundraising Strategies

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Date:  July 30, 2014 Time:  10:00 am PT / 1:00 pm ET Register here! Online fundraising has made it easier to raise money to support your cause … [more here...]

Celebrate Loin Pain Hematuria Syndrome (LPHS) Awareness Day on August 1st

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Organization: LPHS Awareness Submitted by: Stefanie Carmody Help us raise awareness for Loin Pain Hematuria Syndrome (LPHS) on August 1st, … [more here...]

Head of FDA’s Rare Disease Division Departs, Leaving Agency Looking for New Leader

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The US Food and Drug Administration (FDA) is looking for a new leader for its Rare Diseases Program. In an email to staff on 16 July 2014, John … [more here...]

Patient Advocacy Summit 2014: The Unstoppable Charity

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We all have our reasons. Sons, daughters, parents and friends—it’s a guarantee that anyone managing this sort of charity non-profit has been touched … [more here...]

Progeria Research Foundation Featured on Katie Show, Monday July 28th

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The Progeria Research Foundation will be featured on The Katie Show Monday, July 28th. The segment will include a moving tribute to Sam Berns, who … [more here...]

Immune Deficiency Foundation: September Retreat in Portland

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Join The Immune Deficiency Foundation for a Weekend Retreat for People Living with PI! This year's event takes place in Portland, Oregon on … [more here...]