Les Porphyries

 

Nous croyons nous aussi que “des solutions” viendront des travaux concertés entre chercheurs du monde entier.

Pour nous, les échanges internationaux sont une réelle source d’espoir.

Conformément à nos statuts, nous avons contacté les autres associations de malades porphyriques à l'étranger et tout particulièrement en Europe. Beaucoup d’entre elles ont répondu très chaleureusement à nos messages, vous les trouverez ci-dessous. Nous espérons pouvoir travailler en étroite collaboration avec ces structures internationales.

 

Dear friends from all over the world,

Yes, we believe that success in research will result from international cooperation. We are full of hope because we know these exchanges will lead to a better knowledge of porphyria and hopefully one day to a real improvement in the lives of porphyrians. You will find below extracts of our conversations with other patients’ associations like ours. Please feel free to write to us should you need additional information: association.porphyries@gmail.com

 

INTERNATIONAL NEWS- NOUVELLES INTERNATIONALES-INTERNATIONALS NEWS-

Porphyrins and Porphyrias 2009 :

 

Venue: Stockholm, Sweden - Date: 14–18 June 2009
The scientific program will cover the latest developments in the field of heme-related disorders. The meeting will include plenary sessions, oral presentations and poster presentations. Contributions will be made from basic scientists, molecular biologists, laboratory and clinical academicians, clinical researchers and physicians working in the field of heme metabolism and heme-related disorders. For further details www.sls.se/berzelius/6547.cs

 

 

 

 

www.porphyria.org.uk

British Porphyria Association : Association des Malades Britaniques

Nous avons le grand plaisir d’être conviés à la prochaine réunion de l’Association des Malades Britanniques qui aura lieu le 30 juin prochain à Birmingham et nous les en remercions très sincèrement.

 

Dear Sylvie,

I am writing from the British Porphyria Association.

I think that our help-line replied to your email to us last September.

This is just to let you know that we have finally got round to adding a link to you form our web-site. Sorry it has taken so long.

We hope we can stay in touch, and work together.

With best wishes

John (Chamberlayne)

BPA webmaster and chairman.

 

 

 

 

 

http://www.cpf-inc.ca

Canadian Porphyria Foundation : Fondation Canadienne des Porphyries

 

Hi Sylvie,

Congratulations on your new website! We will be sure to add it to our links.

We wish you every success.

 

Sherry Obsniuk

Communications Coordinator

CPF Motto: Increasing knowledge...Improving health

"Please remember us in your will and trusts"

 

 

 

http://www.porphyria-australia.org

Site Australien

 

Dear Madam -

Thank you for emailing Porphyria Association Inc in Melbourne Victoria, Australia.

It is always good to learn about new groups commencing - wherever they might be.

I hope that your new website will be successful and through it and your organisation be able to assist people experiencing Porphyria and its associated symptoms.

Yours faithfully

 

Jenny Swyer

Administration Officer

 

http://www.porphyriafoundation.com/ American Porphyria Foundation : Fondation Américaine des Porphyries

 

Bonjour, et merci pour votre mail. Je vous souhaite beaucoup de succès dans votre travail. Thank you for writing in English, because as you see my French is not so good!

I'm delighted to receive your message and very pleased to see that you have formed an association for patients there. I have had the pleasure of meeting Prof. Deybach a couple of times, in fact I was treated by his wonderful staff at the CFP when I was in Paris about a year ago. I preferred visiting your museums and gardens, but it was comforting to receive such good care for a porphyria attack when I was far from home.

I will be very happy to add your information to our website and include a notice about your organization in our next newsletter. I look forward to exchanging information about the situation for porphyria care in our two countries, and to working with you for many years to come. Please do not hesitate to contact me if the American Porphyria Foundation can help your association in any way.

Good luck, and I hope we speak again soon,

 

Mira Geffner

Development Director

American Porphyria Foundation

 

http://www.telethon.it/informagene Site Italien

 

 

http://www.porphyria.uct.ac.za/ site d'Afrique du Sud

 

 

http://www.anestcadiz.com/ site de l'Espagne

 

Estimados amigos, saludos cordiales desde España.

Nos alegramos enormemente por su organización y su nuevo Web. Desde este momento estamos a vuestra disposición.

Atentamente,

 

Dr. Antonio Pérez.

Director Ejecutivo.

AnestCadiz Web.

 

http://www.sakuratomonokai.com/ site du Japon

 

Dear Ms. Sylvie-san,

We are very pleased to be advised about the creation of "Association Francaise des Malades Atteints de Porphyries"

for porphyrian patients in France.

We are Japanese association for porphyrian patients called as "Cherry Blossom Patients' Association".

I personally got to know the name of Dr. Jean Charles Deyback when I imported Normosang from Orphan Europein in Paris.

You wish to develop internet links with global patients assocations and we support your idea.

However, we have one problem that our website in English is not available and only Japanese is available.

Frankly it is almost impossible to create English one due to limitation of manpower & budget.

If you do not mind the above, would you develop links to ours.

Best regards,

 

Mr. Ichizo Murotani

Chairman, Cherry Blossom Patients' Association in Japan

 

 

Site polonais :www.porfiria.pl

Message de la Pologne:

 

Bonjour, Je suis ravie de vous voir sur le site d`interne.

Moi, je suis la présidente d`Association en Pologne. Nous travaillons avec des autres associations - au Canada, en Suede mais aussi avec les autres. Bien sûr que Dr Deybach est bien connu chez nous. Notre association n'a que 3 ans mais nous sommes déjà plus que 100 personnes (nous avons plus ou moins 6000 malades en Pologne). Je serais très contente de pouvoir passer des informations avec vous - surtout sur les brochures, des nouvelles du monde des porphyriens

Bonne chance et à bientôt !

Ewelina

krzysztof26@poczta.wp.pl

 

Vous pouvez aussi consulter le site internet de l'EPI : http://www.porphyria-europe.org/04-about/links.asp