IPPN @ ICPP 2022
At the beginning of September, the first International Conference on Porphyrins and Porphyrias since the start of the pandemic was held in Sofia, Bulgaria.
Several members of the International Porphyria Patient Network (IPPN) actively contributed to the meeting by presenting their latest scientific findings and/or new developments in the field, moderating and taking part in panel discussions and representing the voice of the patients in various working groups and informal discussions.
Acknowledgement of IPPN
A highlight was the recognition of the advocacy work the IPPN does to support porphyria patients to gain access to their treatments: Professor Jean-Charles Deybach (France) personally acknowledged Dr. Rocco Falchetto and Dr. Jasmin Barman-Aksözen, President and Vice-President of the IPPN, for their longstanding dedication and achievements in improving the lives of porphyria patients worldwide. In her acceptance speech Jasmin, also on behalf of Rocco, who could not attend the congress, took the opportunity to not only thank the porphyria community for their constant support in providing the care the patients need, but also to direct the attention to considerations of ethical aspects in clinical trial design and the many patients that are still without access to existing effective and approved treatments.
The IPPN would like to thank the organizers of the Congress and the Patient Day for facilitating this valuable in-person event under the current uncertain circumstances.
Contributions by members of the IPPN at the International Porphyria Patient Day
Dr. Cornelia Dechant, medical advisor IPPN (moderation), Dr. Francesca Granata, scientific advisor IPPN and Dr. Jasmin Barman-Aksözen, vice-president IPPN (panelists).
Dr. Jasmin Barman-Aksözen: New Developments in Erythropoietic Protoporphyria.
Contributions by members of the IPPN, scientific congress
ABCG2 variant causes decrease of Protoporphyrin-IX (PPIX) efflux from erythrocytes. Oral presentation by Dr. Francesca Granata et al.
Pathomechanism of hepatocellular carcinoma development in the acute hepatic porphyrias. Oral presentation by Dr. Jasmin Barman-Aksözen et al.
POWER (POrphyria Worldwide Patient Experience Research) Study: Humanistic Impact of Prophylactic Treatment Among Patients with Acute Hepatic Porphyria. Poster presentation with Dr. Rocco Falchetto and Dr. Jasmin Barman-Aksözen.
mtDNA copy number drives the penetrance of Acute Intermittent Porphyria (AIP). Poster presentation with Dr. Francesca Granata.
Givosiran in the treatment of symptomatic patients affected by acute hepatic porphyrias: “Real life” data from the experience of Italian porphyria centers network (GRIP). Poster presentation with Dr. Francesca Granata.
Afamelanotide is associated with dose-dependent liver-protective effects in erythropoietic protoporphyria. Poster presentation with Dr. Jasmin Barman-Aksözen.