The Cystinosis Foundation and the French Association for Information and Research on Genetic Renal diseases (airg) organised a conference in Paris from 28 to 30





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The Cystinosis Foundation and the French Association for Information and Research on Genetic Renal diseases (AIRG) organised a conference in Paris from 28 to 30 June 2002 dedicated to families affected by cystinosis. The objective of the conference was to bring families and professionals working in the field of cystinosis together and help in the understanding of the disease and to present new research.

Professor Broyer from the Necker Children’s Hospital in France chaired this meeting “New Frontiers For Hope”.

The presentations made during this conference are published in this booklet.

La Fondation Cystinose et l’Association Française pour l’Information et la Recherche sur les maladies Rénales Génétiques (AIRG) ont organisé à Paris les 28, 29 et 30 juin 2002 une conférence pour les familles touchées par la cystinose. L’objectif de cette conférence était de rassembler les familles et les médecins travaillant dans le domaine de la cystinose, d’aider à la compréhension de cette maladie, et de présenter les nouvelles recherches.

Le Professeur Broyer de l’hôpital Necker-Enfants Malades en France présidait cette conférence “Nouvelles frontières pour l’Espoir”.

Les présentations faites au cours de cette conférence sont publiées dans cette brochure.

INTRODUCTION 4

INTRODUCTION 5
TEMOIGNAGE DE MARIE 6


Isabelle Manciet, President, AIRG 3

Isabelle Manciet , Présidente de l’AIRG 4

Jean Hobbs Hotz, Présidente de la Fondation Cystinose 4

Texte de Marie ? 5

POURQUOI LES CELLULES RENALES NE FONCTIONNENT-ELLES PAS CORRECTEMENT DANS LA CYSTINOSE ? 15

31

32

RESULTAT 53

L’AMELIORATION DE L’HALEINE 53

IMPRESSION PERSONNELLE 53

IMPRESSION DE L’ENTOURAGE 53

IMPRESSION PERSONNELLE 54

IMPRESSION DE L’ENTOURAGE 54

HALEINE 54

IMPRESSION PERSONNELLE 54

IMPRESSION DE L’ENTOURAGE 54

HALEINE 54

IMPRESSION PERSONNELLE 54

IMPRESSION DE L’ENTOURAGE 54

CONTRAINTE 54

CONCLUSION 54

56

The history of Ågrenska 58

L’histoire d’Ågrenska 61

SOCIAL PROFESSIONAL FUTURE OF PEOPLE WITH CYSTINOSIS 64

DEVENIR SOCIO-PROFESSIONNEL DES PATIENTS ATTEINTS DE CYSTINOSE 65

DIABETE SUCRE CHEZ LES ENFANTS AYANT UNE CYSTINOSE AVEC NEPHROPATHIE 74


It is distressing for families to have to cope with a chronic disease like cystinosis. More distressing is the fact that this is a rare disease not immediately recognised by doctors, a disease which can present with a number of possible symptoms, requires complex treatment and can result in numerous complications. Endeavouring to meet other parents in the same situation is a natural way to cope with the problem. Doctors can only encourage the formation of associations like the Cystinosis foundation and the AIRG. This meeting united those concerned directly or indirectly with cystinosis, and afforded them the opportunity to talk about their own experiences. Specialists in this field discussed disease symptoms and gave guidelines for the optimal known treatment. They provided the most recent information on the research front. The program was built in this spirit following collaboration with world wide specialists. Incredible progress has already been made in the understanding of cystinosis but a lot remains unclear. The benefits of this meeting and the following document are to increase knowledge of families, patients and also doctors. We are convinced that shared knowledge is the basis for best disease management, and will have an impact on compliance with a difficult treatment. It will also give hope for the future.

Professor Michel Broyer, Necker Children’s Hospital, Paris



The Association for Information and Research on Genetic renal diseases, AIRG was created in France in 1988.

Our main objectives are to :

  Inform members of research projects and progress accomplished in Europe and abroad on genetic renal failure therapy.

  • Emotionally support patients, particularly during the wait for dialysis and kidney transplant

  • Help in research development

The AIRG is supported by a scientific committee chaired by Professor Jean-Pierre Grünfeld from Necker children’s hospital in Paris, and is part of the Rare Disease Alliance which unites over 80 rare disease associations.

The AIRG has edited a monography on cystinosis. During the annuel congress of nephrology, the AIRG awarded a prize to a young researcher for his work on cystinosis.

For more information on the services provided by the AIRG, you are welcome to consult our website : www.airg-france.org

In 2002 the AIRG were proud to receive the International Cystinosis Congress and the Cystinosis foundation in Paris.
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