Addressing PNH unmet medical needs: a policy roadmap to aspire for change

Désolé, cet article est seulement disponible en Anglais Américain.

Below is a  recording of a multi-stakeholder online conference held on December 7, 2022 and organised by Partnering4PNH, a global multistakeholder policy initiative which brings together PNH specialised healthcare professionals, nurses, patients and patient organisations from Europe, Canada and Australia. Speakers included:

  • MEP István Ujhelyi (S&D, Hungary)
  • MEP Stelios Kympouropoulos (EPP, Greece)
  • Dr Morag Griffin (Haematologist PNH Specialist, Leeds Teaching Hospital, United Kingdom)
  • Barry Katsof (President and Founder, Canadian Association of PNH Patients, Canada)
  • Cindy Anthony (Executive Director, Aplastic Anemia and Myelodysplasia Association of Canada, Canada)
  • Louise Arnold (PNH Specialist Nurse, Leeds Teaching Hospital, United Kingdom)
  • Michael Brown (PNH Clinical Nurse Consultant, The Royal Melbourne Hospital, Australia)
  • Emelie Persson (Head of Global Medical Affairs and Clinical Science Pegcetacoplan, Sobi, Sweden)

This will also be published in January on Partnering4PNH | my-PNH (