Report 2020 General Assembly

The 2020 Ipnet General Assembly and Scientific Meeting were transitioned to a digital event on December 4th, 2020. Here is the program, including 9 videos: 6 presentations from the General Assembly and 3 presentations from the Scientific Meeting. These videos are available following the links below.

General Assembly Meeting Ipnet Association
December 4 th , 2020 at 12:00 – 14:00 CET

  • Opening and Welcome, by Sverre Sandberg
  • Approval of Minutes GA Meeting Sep 9 th , 2019, by Eliane Sardh
  • Presentation of EB Board 2021-22, by Sverre Sandberg
  • Report of Ipnet activities, by Sverre Sandberg
  • Financial information, by Janneke Langendonk
  • Reports from Working Group Chairs:

Laboratory WG:
2020 Report by Aasne Aarsand, Laboratory Working Group Chair

Acute Hepatic Porphyria WG:
2020 Report by Penelope Stein, Acute Hepatic Porphyria Clinical Working Group Chair

Cutaneous Porphyria WG:
2020 Report by Michael Badminton, Cutaneous Porphyria Working Group Chair

Research & Development WG:
2020 Report by Laurent Gouya, Research and Development Working Group Chair

Website WG:
2020 Report by Caroline Schmitt, Website Working Group Chair

  • Conclusion and Closure, by Sverre Sandberg

 

Scientific Meeting Ipnet Association

December 4 th , 2020 at 15:30 – 18:30 CET

1. Givosiran: Efficacy, safety and therapeutic scheme, by Eliane Sardh, Stockholm:
2020 status of Givosiran, by Eliane Sardh

2. Iron deficiency as a treatment of CEP, by Emmanuel Richard, Bordeaux:
Iron deficiency: a treatment of CEP, by Emmanuel Richard

3. Generation and Characterization of an Inducible Hepatocyte-specific ALAS1 Knockout Mouse
Model, by Makiko Yasuda, New York

4. Farewell Biorad: MS methods for PBG/ALA, by Thibaud Lefebvre, Paris
2020 MS methods for PBG/ALA, by Thibaud Lefebvre

5. Highlights from the MT-7117 Dersimelagon Phase 2 Muticenter, Double-Blind, Placebo-
Controlled Trial in 102 EPP Patients, by Robert Desnick, New York