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Great day for all Porphyria patients in

Place 2 bePlace 2 beBo

 


The evening before the Patients day there was an option to have a formal group discussion about Clinuvel for all EPP-organisations throughout the world.


Round table discussion 1Round table discussion 1Rocco Falchetto lead the group to get organised, use politics and use all the possibilities through doctors and politicians to get the fastest way for Clinuvel in your country. What is important is that the physicians that have to help you REALLY UNDERSTAND what EPP is all about. It is good to tell them what people can't do through their illness and make figures in amounts and visibility of the daily problems. 

Round table discussion 1Round table discussion 1After that we came together in Mercure Bordeaux Cité Mondiale with all the countries and all the kinds of Porphyria. Also a large delegation of Alnylam and some people of Clinuvel joined us to tell what there will be done in the future. This evening and the day afterwards were organised by The France Porphyria Foundation, with Sylvie le Moal in particular. She and her team has made this conference to a great success this year! But we also thank our founders for their financial contribution. 

Place de la BoursePlace de la Bourse

 

 

 



The day after that we started on Sunday early. We started the patients day at 8:30 the day to talk about the www.ippn.info website with Rocco and Sylvie.


Sylvie told us a personal story, why she is this that strong committed to help people with porphyria.
 
After that all the countries got time to tell everybody about their own organisation. How long are you together, how many patients and members, what your goals are and what was the best thing happened with or through your organisation. It was hard to say that your story had to stop within time, because everybody was so passionate. For instance the Netherlands still do not understand why we are in a great Europe with a leading roll in Brussel, but every country has to fight their own fights to get a necessary drug as Scenesse or Alnylam that can give their patients a better life.

Patients dayPatients day
Extra attention on this day go to the nations that had to travel enormous mileages, to get in France: America, Rusland, Brasil, Colombia, Canada, Australia (where the president was doing her work the last year out of her bed in a hospital). I hope we didn't forget anyone. Such a strong commitment!

An extra attention was made to this website, the countries that miss on our special page with all the different countries, should sent an email to info@ippn.info. The website will be updates with your URL and flag.

Later on there we're presentations of several doctors about different kinds of Porphyria, we will update you later with extra information. Also extra information was given by  Alnylam, Clinuvel and Orphan.

After that the group split up and went to have a questions and answers part with specialists of their own Porphyria. That was a good action! Many questions we're asked. And I hope that every Porphyria will sent in their notes and photo's of these meetings. Because we were together at one place, with EPP.

Als0 people from France and Spain are looking into options to go on a summer camp withe children who suffer from EPP. The Belgians will sent some instructors and we hope that this will bring children a nice week. Without thinking about the sun for some days.

The most important thing is always seeing each other throughout the world, and I know that if we combine forces we will get a better life for everyone with this terrible diseases.

Some of the people from different countries, after a great patients day!Some of the people from different countries, after a great patients day!

 

In between we had a lot of nice hors d'oeuvres and enough to drink. Again, we thank France for their great effort to bring us all together.

Special thanks go out to the volunteers, translators and again Sylvie.

 

Volunteers and technical crewVolunteers and technical crew