2013 International Porphyria Conference,
Lucerne, Switzerland
2013 International Porphyria Conference Video and Audio are available The International Porphyria Patient Day, organized by the Swiss Society for Porphyria and the German EPP Patient Group, was held on Saturday, May 18th, 2013.
Video and Audio of the International Porphyria Conference are available by joining RareConnect.org.
On the video, representatives from patient groups introduce themselves; tell about the organizations in their respective countries and share patient testimonials.
Porphyria Argentina - Estela Y. Ferrari de Frassia
Porphyria Australia - Sean Hegarty
Porphyria Brazil - Bénie Maria Scandelari Bussmann
Alberta Porphyria Society (Canada) - Wendy Sauve
Porphyria France - Sylvie Le Moal
Porphyria Spain - Joaquin Montoto
Porphyria Sweden - Kerstin Bjernevik
Porphyria United Kingdom - John Chamberlayne
American Porphyria Foundation - Desiree Lyon Howe (no slide show)
EPP Germany - Verena Schmeder
Porphyria Switzerland - Rocco Falchetto
The video also contains the medical presentations given at the meeting:
Acute porphyrias : Diagnosis, complications and treatment options - Pr Jean-CharlesDeybach, MD, PhD
Erythropoietic Porphyria : Treatment options and long-term complications - Staffan Wahlin MD PhD
Pain in Porphyria - hepatic and cutaneous - Dr. Matthias Firnau
Use this link to access the Video and Audio for all of the above.https://www.rareconnect.org/en/community/porphyria/article/international-meeting-of-porphyria-patients-lucerne-2013-1
Video and Audio of the International Porphyria Conference are available by joining RareConnect.org.
On the video, representatives from patient groups introduce themselves; tell about the organizations in their respective countries and share patient testimonials.
Porphyria Argentina - Estela Y. Ferrari de Frassia
Porphyria Australia - Sean Hegarty
Porphyria Brazil - Bénie Maria Scandelari Bussmann
Alberta Porphyria Society (Canada) - Wendy Sauve
Porphyria France - Sylvie Le Moal
Porphyria Spain - Joaquin Montoto
Porphyria Sweden - Kerstin Bjernevik
Porphyria United Kingdom - John Chamberlayne
American Porphyria Foundation - Desiree Lyon Howe (no slide show)
EPP Germany - Verena Schmeder
Porphyria Switzerland - Rocco Falchetto
The video also contains the medical presentations given at the meeting:
Acute porphyrias : Diagnosis, complications and treatment options - Pr Jean-CharlesDeybach, MD, PhD
Erythropoietic Porphyria : Treatment options and long-term complications - Staffan Wahlin MD PhD
Pain in Porphyria - hepatic and cutaneous - Dr. Matthias Firnau
Use this link to access the Video and Audio for all of the above.https://www.rareconnect.org/en/community/porphyria/article/international-meeting-of-porphyria-patients-lucerne-2013-1
