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Navigating the Acute Hepatic Porphyria Constellation

Clinical insights with Prof. Laurent Gouya & Prof. Ulrich Stölzel

For Healthcare Professionals Only

At the invitation of Alnylam Pharmaceuticals, we would like to share with you the clinical experience from our Porphyria Expert Centers in Paris (France) and Chemnitz (Germany) with the challenges of diagnosing and managing patients with Acute Hepatic Porphyria (AHP) – a chronic disease with potentially life threatening attacks.
Specifically, this webinar aimed to:

  • Increase scientific awareness of AHP and the cardinal symptoms that should trigger the correct diagnostic pathway – shortening the patient journey to diagnosis
  • Provide a better understanding of the pathophysiology of AHP and the role of ALAS1 in disease development and management
  • Highlight the true disease burden, including chronic long-term complications and impact on patient quality of life
  • Review the latest developments in the management and treatment of AHP

This webinar was recorded on 18 November 2020 and we hope that you will find this recording useful as you navigate the AHP constellation in your clinic.

Yours sincerely,

Prof. Laurent Gouya

Paris Diderot University

Prof. Laurent Gouya, a clinical and molecular geneticist, is head of the Biochemistry and Molecular Biology Laboratory at the University Hospital of Paris Nord and the Reference Centre for Rare Porphyria Diseases in France. He is also a member of the board of the European Porphyria Network (EPNET). Prof. Gouya has been developing clinical, biochemical and molecular expertise in the field of porphyrias for 25 years, including training under Yves Nordmann and Jean-Charles Deybach. His current research focuses on the physiopathology of AHPs, new therapeutic approaches and the mechanisms of dominance and variable clinical expression.

Prof. Ulrich Stölzel

Klinikum Chemnitz Porphyria Centre

Prof. Ulrich Stölzel, a specialist in both Internal Medicine and Gastroenterology, is Head of the Department of Internal Medicine II at Klinikum Chemnitz, and leads the Chemnitz Porphyria Centre, which specialises in treatment and observation of complicated and severely affected patients with AHP. Associated with the German Competence Centre of Porphyria Diagnostics and Consultation, and involved in the EXPLORE and ENVISION studies, the Chemnitz Porphyria Centre aims to help patients understand AHP, how to avoid trigger factors and how to select a treatment if necessary.

This meeting was organized and funded by Alnylam Pharmaceuticals and contained information on Alnylam products.

AS1-CEMEA-00200 February 2021