International Meeting of Porphyria patients Lucerne 2013

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. Comments or questions about information contained in the video? Join the conversation.

Written by Porphyria patient advocates, published over 3 years ago.

International Meeting of Porphyria patients Lucerne 2013

Primary objectives of the Patient Day:

-Networking between individual patients, their organizations and the scientific experts in the field of porphyria

-Sharing information on the latest research activities and clinical advances

-Discussing international collaborations between patient organizations and planning for an international umbrella organization to more effectively protect patients’ well-being and promote their interests

The videos and files posted here are for personal use only. These videos and presentations should not be distributed further or shared on other websites without the consent of the author. Click on the presentation name to download the file when available.

Welcome Remarks

 
 

 

Patient groups introduce themselves

 

Listen to the entire audio:

Click on the presentation title to download the slides.

Porphyria Argentina - Estela Y. Ferrari de Frassia

Porphyria Australia - Sean Hegarty

Porphria 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 (oral presentation without slides)

EPP Germany - Verena Schmeder

Porphyria Switzerland - Rocco Falchetto

Message from Conference President

 

Medical sessions

Acute porphyrias : Diagnosis, complications and treatment options -Pr Jean-Charles Deybach, MD, PhD

Listen to the entire audio:

Erythropoietic Porphyria : Treatment options and long-term complications Staffan Wahlin MD PhD

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Pain in Porphyria - hepatic and cutaneous - Dr. Matthias Firnau

 

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Patient Testimonials: Rocco (EPP) and Sue (AIP)

 
 

Presentation: Living with Acute Intermittent Porphyria (AIP) - Sue Burrell

Resources

Porphyria community on RareConnect - Rob Pleticha, EURORDIS

Listen to the entire audio:


Closing of the patient day
 

Written by Porphyria patient advocates, published over 3 years ago.

3 comments for «International Meeting of Porphyria patients Lucerne 2013»

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  • wsauve | published over 3 years ago | Originally written in English

    I am wondering if there is anyone who took notes or has information from these sessions on Saturday, May 18th:

    ROUND TABLE: THE DIFFICULT PATIENT WITH ACUTE PORPHYRIA, FREQUENTLY RELAPSING OR CHRONIC: HOW TO HANDLE?

    QUALITY CONTROL FOR THE DIAGNOSIS OF PORPHYRIA (We are sometimes contacted by people trying to get a diagnosis of porphyria.)

    PORPHYRIAS: STATE OF PLAY by Elisabeth Minder (We are most frequently contacted by people trying to get treatment for porphyria.)

  • Mauersegler | published over 3 years ago | Originally written in English

    Hello wsauve,

    and welcome :-)

    Unfortunately, I do not think there are protocols available from those sessions. However,we do have some expert-members here; maybe some of them attended the round table discussion and could summarize the session?

    For the quality control for diagnoses, I think it would be the best to be tested in an acknowledged lab. Amy, might you provide some help here? Like contacts to US porphyria centres etc.

    Kind regards,
    Jasmin

  • amychapman | published over 3 years ago | Originally written in English

    I would be happy to help you. If you could please email me @ AmyLChapman1992@gmail, I will be most happy to put you into contact with the proper resources and explain from txt book expert information to help you understand Porphyria. I also have AIP

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