Fernanda Aspilche: Bringing the Alpha-1 Community to the European Parliament
Fernanda Aspilche, President of Alpha-1 Europe Alliance asbl, Head of Client Services at Euroclear, shared a post on LinkedIn:
”I am so proud! This week, we brought the Alpha-1 community to the European Parliament!
Patients, clinicians, policymakers, industry, all together around one shared goal:
Raising awareness of alpha1antitrypsin deficiency, and discuss about progress and challenges in Europe.
A big thank you to MEP Olivier Chastel for hosting and for the clear message:
Europe must accelerate efforts to ensure earlier diagnosis and equitable access to treatment for all patients.
Grateful to all speakers, our moderator Flaminia Macchia and to our incredible community: Stefaan van der Spiegel, Hugues Malonne, Marilena Vrana, Gerry McElvaney, Stephanie Everaerts, Knut Skaar, Bernd Dobbert, Clàudia Garcia Novellon, Alexander Kandt.
This is how change starts.
We were delighted to share our Call to Action, not just as priorities on paper… but as realities we live.
From our needs, to the waiting for a diagnosis…
to navigating care and access…
to ensuring supply of plasma…
to the need for research, sustainable treatments, and being part of the decisions that shape our lives.
Not abstract. Personal. All points we can link to a moment in the patient journey.
We need to act, because behind every decision, every policy and every delay…
there is a person waiting.”
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