Addressing PNH unmet medical needs: a policy roadmap to aspire for change
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 (sobi.com).