Alpha 1 Global

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  • 2022 Improving Care for Alpha-1 Patients Global Webinar

    2022 Improving Care for Alpha-1 Patients Global Webinar

    In anticipation of the 2022 European Alpha-1 Awareness Day on Monday, 25 April 2022, Alpha-1 Global hosted the Improving Care for Alpha-1 Patients webinar. This marks the 5th year that Alpha-1 Global has hosted an event to commemorate Awareness Day. In lieu of the traditional in-person roundtable event that has been held in Brussels in…

  • Challenges to Early Diagnosis of Alpha-1 and How to Overcome Them

    Challenges to Early Diagnosis of Alpha-1 and How to Overcome Them

    Proper and timely diagnosis – the first stumbling block for patients suffering from rare diseases The first step before treatment for any disease or illness is diagnosis – but we all know that this is sometimes the hardest part of the journey towards recovery. Getting a proper and timely diagnosis is crucial for anyone whose…

  • The EU’s Cross-border healthcare directive and you – an Alpha-1 patient’s chance for a better life

    The EU’s Cross-border healthcare directive and you – an Alpha-1 patient’s chance for a better life

    Cross-border healthcare in the European Union – what’s it all about? Every patient suffering from a rare disease is painfully familiar with the struggle of getting access to adequate care. For some, like Alpha-1 patients, the struggle begins at an even earlier stage, with troubles related to receiving a proper diagnosis. Should you even manage…

  • Alpha-1 Global is developing a new Alpha-1 Advocacy Pathway

    Alpha-1 Global is developing a new Alpha-1 Advocacy Pathway

    Advocacy and policy can improve diagnosis and treatment of Alpha-1 patients. In order to encourage and facilitate Alpha-1 patients advocacy efforts, Alpha-1 Global has started work on a new Advocacy Pathway. Dear Alphas, We are pleased to announce that over the past few months we have been working on updating and restructuring the Alpha-1 Advocacy…

  • The Patient Perspective of Alpha-1 Antitrypsin Deficiency: Disease Burden and Unmet Needs

    The Patient Perspective of Alpha-1 Antitrypsin Deficiency: Disease Burden and Unmet Needs

    The European Respiratory Society has recently published their latest article of Breathe, a clinical educational publication, which features a story centered on the lives of three patients with Alpha-1 Antitrypsin Deficiency. They reflect on living with AATD and its impact on their lives including inequality of access to treatment across Europe. Three AATD patient stories…

  • Long Harbour man is in a deadly waiting game with Newfoundland and Labrador government over treatment for rare disease

    Long Harbour man is in a deadly waiting game with Newfoundland and Labrador government over treatment for rare disease

    Alpha-1 antitrypsin deficiency means Chris Williams has grim prospects without replacement therapy the province’s drug plan won’t cover LONG HARBOUR, N.L. — Chris Williams’ life has changed dramatically from his younger days. “Oh yes, I can’t do much really,” an out-of-breath Williams said a minute or two into the conversation after picking up the phone this…

  • RESPREEZA® Alpha-1 Proteinase Inhibitor (Human) Update

    RESPREEZA® Alpha-1 Proteinase Inhibitor (Human) Update

    The following is a statement from CSL Behring regarding RESPREEZA® in the European Union: February 8, 2021 – As a precautionary measure, CSL Behring has instituted a recall of certain batches of RESPREEZA®, due to a manufacturing deviation that occurred during the filling process. Based on extensive product testing and a thorough analysis of pharmacovigilance…

  • CSL Behring Announces EU LEAD Grants for Advocacy Development

    CSL Behring Announces EU LEAD Grants for Advocacy Development

    Dear EU Alpha-1 Global Partners, We are pleased to provide you information regarding CSL Behring’s announcement for Local Empowerment for Advocacy Development (LEAD) Grants available to European Alpha-1 organizations. CSL Behring Local Empowerment for Advocacy Development (LEAD) Grants are community-based grants of approximately  €10,000. These grants are intended to help local patient organizations achieve their advocacy…

  • Alpha-1 Global creates a new Alpha-1 Advocacy Pathway

    Alpha-1 Global creates a new Alpha-1 Advocacy Pathway

    We are pleased to announce that over the coming months we will work on updating and restructuring the Alpha-1 Advocacy Pathway on the website of Alpha-1 Global. A new microsite will be set up that will help you to develop or expand your advocacy activities through several steps. Advocacy can help to influence policies that…

  • PPTA urges decisive action in Europe to increase plasma donations

    PPTA urges decisive action in Europe to increase plasma donations

    Shortfalls in donations due to COVID-19 could threaten patient access Brussels, (October 6, 2020) — International Plasma Awareness Week (IPAW) takes on particular urgency this year, as the COVID-19 pandemic has introduced additional pressure on the delicate balance between plasma collection and the availability of finished therapies. Considering the complex manufacturing of plasma-derived therapies can…

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