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

Published on April 15th, 2021

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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 Pathway on the Alpha-1 Global website. A new microsite will be set up that will help you to develop or expand your advocacy activities through several steps. Advocacy is crucial for engaging with policies, systems or strategies which have an impact on the daily lives of our patient community. Policies for diagnosis and treatment should help patients rather than add to the daily challenges they experience. We hope that you would be able to join us so we can work towards better circumstances for Alpha-1 patients, and we hope the Advocacy Pathway can support your activities.

The briefest definition of advocacy is supporting and arguing for a cause or policy. This is a process that requires preparation and a tailored approach, during which you interact with policymakers. The purpose of the Pathway is not only to explain what advocacy is, but also what steps to take to simplify the process and to make sure that you use the most effective methods. The new microsite will set out these steps, guide you through them and help you develop your own activities.

If you were unable to join the advocacy webinar organized at the end of February but are interested in learning more, you can access the recording here. We also kindly ask that you take 10 minutes to fill out this survey to better guide our efforts in supporting Alpha-1 patients. The survey includes questions on the webinar, but also on advocacy in general, and it can be submitted anonymously. You also have the option of adding your email should you wish to be contacted by Alpha-1 Global.

For many people advocacy may be something new, which they have never engaged in. Advocacy activities can be made more simple by following a few steps. More importantly, advocacy can bring great results that can improve the way Alpha-1 is diagnosed and treated. This means that your efforts can benefit the Alpha-1 patient community, and even entire the rare disease community.

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