Rencontres 2015 à ROUSSAY (49) : Compte-rendu (dont enregistrements audio)
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Lettre de 2015 : Cliquez ici

Presentation of the A.P.C.H Association



What is the A.P.C.H Association for?


To support, listen, inform, talk and help.

Because this rare disease is hard on everyday life and for the future of the patients.

Because, everyday in France, there are 200 new cases of PCH diagnosed.

Because it is necessary to inform and draw the attention of the doctors on this disease to help them make a better and more precise diagnostic.

Because research needs money to continue its efforts.

Because the association helps to organize meetings between people who are facing this disease, or are somehow involved or concerned about it.

Who are the different people involved in this association ?

 

The association includes :

- Members directly concerned by hereditary chronic pancreatitis, like the patients and their families. We try to do our best to keep them informed about the latest discoveries made on their disease.

The Administrative Members :
- a President
- a General Secretary
- a Secretary
- a Treasurer
- a Webmaster

- Members of the medical profession particularly invested in the management of this disease, and qualified persons : (The Scientific Council)

-Sympathizers members : people not directly affected by chronic pancreatitis hereditary but willing to help.

- Partners:
Laboratories, insurers, and so on.
Mr Andre Santini,
Former Minister, Deputy of the region Hauts de Seine,
Mayor of Issy-les-Moulineaux,
Honorary President,
Sponsor of this association.

 

The Goals

 

To provide technical and moral assistance to families facing chronic pancreatitis hereditary.

To contribute to the research effort, and the development of improved
caring practices.

To achieve its goals, the APCH will, according to proposals and possibilities


- Support research on fundamental genetics

First of all, in late 2004, APCH launched the first epidemiological study on chronic pancreatitis hereditary in France.

As a result of this epidemiological study, we decided from 2006 to 2009, to support genetic research, in the form of a financial aid to a researcher committed to the research unit INSERM Brest for one year: (38 000 euros).

Genome of the hereditary chronic pancreatitis (PCH)
A population of patients in search of its genetic identity, hoping to find some therapeutic solutions…

This support of research conducted by the team of Professor Claude FEREC began on October 1st, 2006, thanks to your donations and the companies who supported us in our actions, like for example : Ariane Régie Assuréo, Coop logement, Fondation Groupama IIe Gang'H, François Lavrat, Mayoly Spindler, Socag , Solvay Pharma, Spie SCGPM, Super assureur, Uni beton, City of Issy-les-Moulineaux…

On November 1st, 2006, the APCH managed to collect the sum of 38 000 euros, the financial equivalent of one year of research.

The assistance provided by the Regional Council of Ile de France in the form of a financial aid named PICRI 2006, (Partnerships Institutions Citizens for Research and Innovation), will cover 2 years’support, 2007 and 2008. The APCH will then try to find other ways to finance the research efforts of 2009.

 

- Communicate by all possible means, with the Medical Corps and the general public via different medias such as:

- Explanatory and educational brochure prepared by the Scientific Council and available since spring 2005

- Meetings open to everyone

- Scientific Congress

- Letter to members including information on recent developments about the hereditary chronic pancreatitis , and recent actions made by the APCH.

 

THE SCIENTIFIC COUNCIL:


The Scientific Council is composed of members of the medical profession particularly invested in the management of this disease, and qualified persons, who join the Association. It is composed as follows :

Honorary Chairman of the Scientific Council:
Pr Louis Le Bodic
Nantes

Chairman of the Scientific Council
Pr Philippe RUSZNIEWSKI,
Chef de Service de Gastro-Entérologie à l’Hôpital Beaujon, Clichy

Pr . Marc BARTHET,
Service d’ Hépato-gastro-entérologie, Hôpital Nord, Marseille

Pr. Louis BUSCAIL,
Service de Gastro-entérologie et Nutrition , Hôpital Rangueil, Toulouse

Pr. Claude FEREC,
Chef de Service, Laboratoire de Génétique Moléculaire et Epidémiologique INSERM, Brest

Pr. Olivier GOULET,
Service de Soins Intensifs en Gastro-Entérologie, Hôpital Necker, Paris

Pr. Pascal HAMMEL,
Président du Club Français du Pancréas,Paris

Pr. Philippe LEVY,
Service de Gastro-entérologie, Hôpital Beaujon Clichy

Pr. Christian PARTENSKY,
Service de Chirurgie Digestive, Hôpital Edouard Herriot, Lyon

Dr. Matthieu SCHNEE,
Service de Gastro-Entérologie – C.H.D. la Roche sur Yon

 

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