News

1st Hirschsprung's Disease Conference: Replay Videos Now Available!

On November 23, 2024, the first Hirschsprung's Disease Conference was held at Robert Debré Hospital (AP-HP).

This initiative, jointly organized by the Reference Center for Rare Digestive Diseases (CRMR MaRDi) and the Francophone Association of Hirschsprung's Disease (AFMAH), brought together disease experts (doctors, surgeons, paramedical professionals: psychologists, stomatherapists, etc.) and patient association representatives.

Participants were able to discuss recent scientific advances, share their experiences and viewpoints, and express any difficulties encountered, with the common goal of proposing improvements in the understanding of the disease and patient care.

This particularly rich day was structured around presentations by professionals and patients, and round tables covering all aspects of Hirschsprung's disease. Discussions focused on improving the care pathway, especially during the transition to adulthood, the importance of multidisciplinary care and communication between different professionals and associations, as well as the latest advances in fundamental and genetic research.

To share the content of this conference with as many people as possible, a video recording of all discussions was made. A white paper is also being drafted, which will summarize the conference and propose concrete actions to be taken in the coming months and years.

Watch the entire conference in video ( in french):

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    Link 1🎥
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    Link 2 🎥
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    Link 3 🎥

Acronymes :

  • CRMR MaRDi : Reference Center for Rare Digestive Diseases
  • AFMAH : Francophone Hirschsprung's Disease Association
  • AP-HP : Greater Paris University Hospitals

Vous êtes concerné(e) par les Maladies Inflammatoires Chroniques de l'Intestin (MICI) ?

Le navigateur Pierre-Louis Attwell, atteint de la maladie de Crohn, et l’équipe Vogue avec un Crohn vous invitent à une soirée d’échange et de partage sur les MICI, à Lille, le lundi 21 octobre 2024, de 19h00 à 21h00, à l'UGC Ciné Cité Lille.

Avec la participation de :

  • Dr Maria Nachury (CHU de Lille)
  • Anne Buisson, directrice de l’Association AFA Crohn RCH France

Cet événement est gratuit et ouvert à tous, sur inscription obligatoire, dans la limite des places disponibles.

Programme de la soirée :

  • 19h00 : Projection du film « Une aventure de malade »
    Ce documentaire (52 min) retrace la participation de Pierre-Louis Attwell à la Route du Rhum 2022. Entre hôpitaux et grand large, il partage, sans filtre, son quotidien de patient-navigateur.

  • 20h00 : Échange avec le public
    Que vous soyez patient(e) atteint(e) de la maladie de Crohn, de rectocolite hémorragique (RCH), ou proche d'une personne concernée, vous pourrez poser vos questions sur les traitements, la nutrition, l’activité physique, et bien d'autres sujets encore.

N'hésitez pas à venir avec vos proches et à diffuser l'information autour de vous.

L'affiche de l'événement se trouve ici : Détails (lien externe) 

👉 Pour vous inscrire, cliquez ici S'inscrire  (lien externe)

CRMR MaRDi

Dear Community,

We are pleased to invite you to consult the presentations and replays of the MaRDi Centers conference.

Hello everyone,

We are pleased to invite you to the Annual Day of the MaRDi Centers, which will take place on June 11, 2024, in Lille (France), at the multimedia amphitheater of the Faculty of Medicine Henri Warembourg, Avenue Eugène Avinée - 59120 Loos, Lille.

You can also participate in the meeting remotely. In both cases, registration is free but mandatory via this link.

The program for the day:

9:30 am - 10:00 am: Annual Review and Updates

Prof. Jean-Pierre HUGOT and Dr. Naim DRID (Paris)

10:00 am - 13:00 pm: Achievements of Centers and Associations

  1. Pediatric autoimmune pancreatitis, Dr. Guillemette D'ARGENTRE and Dr. Laure BRIDOUX-HENNO (Rennes),10:00 am – 10:20 am
  2. e-ETP MICI children, Dr. Stéphanie COOPMAN and Dr. Christine MARTINEZ-VINSON (Lille and Paris),10:20, am– 10:40 am
  3. Impact of perinatal exposure to titanium nanoparticles on adult intestinal development and homeostasis, Frederick BARREAU (Toulouse),10:40 am– 11:00 am 
  4. MaRDi Research Pipeline, Dr. Hélène LENGLINE and Mrs. Servane ALIROL (Paris),11:00 am - 11:20 am

11h20 – 11h35 : Break

  1. State of botryomycome in children with NPAD, preliminary data, Dr. Pierre POINSOT (Lyon) 11:35 am - 11:55 am
  2. MaRDi Welcome booklets, Mrs. Manon PICCHI (Marseille),  11:55 am - 12:15 pm
  3. Parenteral training platform, Dr. Marie Edith COSTE (Marseille) and Prof. Noël PERETTI (Lyon); 12:15 pm - 12:35 pm
  4. Registered and off-label drugs: use or the limits of care, Mrs. Laurence LANÇON (Marseille), 12:35 pm - 12:45 pm
  5. MaRDi website, Dr. Naim DRID and Mrs. Marine GONZALEZ (Paris and Lille),12:45 pm- 13:00 pm

1:00 pm – 2.00 pm : Break
Afternoon: 2:00 pm - 5:30 pm

MaRDi / Fimatho Conference: "Crossed Perspectives on Research in Rare Diseases"

  1. Introduction
  2. Towards pediatric clinical research adapted to young patients and their families, Ségolène GAILLARD (Project Manager of the Kids France Program, Lyon):
  3. Small sample size clinical trials, Corinne ALBERTI (Professor, Robert Debré Hospital)
  4. The industry's perspective, Ludovic DUPONT (Medical Department, Amgen)
  5. The researcher's perspective, Pascal DE SANTA BARBARA (Research Team Leader on POIC)
  6. The perspective of associations and patients, Anne BUISSON (Director of the AFA Crohn RCH France association)

Closing at 5:30 pm

We look forward to seeing you there!


CRMR MaRDI
Robert-Debré

Hello everyone,

We are pleased to announce that the Cure MVID Association is joining the MaRDi.Founded by a family affected by Microvillus Inclusions Disease (MVID), Cure MVID is dedicated to research and supporting patients.

MVID, a rare genetic disease, presents medical challenges. With no curative treatment available to date, total parenteral nutrition remains the only management option. However, through Cure MVID, efforts are being made to find a treatment for this disease.

Cure MVID is working on promoting research on MVID, raising awareness among the public, and supporting patients and their families.

The president of the association is Mr. Ganesh MAMODALY.

Association Contacts:

Website: https://curemvid.com
Phone: 06 12 92 04 83
This email address is being protected from spambots. You need JavaScript enabled to view it.

Social Media: Twitter: https://twitter.com/CureMVID Facebook: https://www.facebook.com/people/Cure-MVID-Association/61557628268265/ LinkedIn: https://www.linkedin.com/company/cure-mvid-association/

We are delighted to welcome this new collaboration and eager to continue our commitment together to actively support patients and their families affected by Microvillus Inclusions Disease (MVID).

About MaRDi:

The MaRDi (Rare Digestive Diseases) are labeled reference and competence centers in the management of rare digestive diseases in France and are part of the FIMATHO health network (rare abdominal-thoracic diseases).

Hello everyone,

We inform you that the Association "Living with Gastroparesis" has officially joined the MaRDis (Rare Digestive Diseases).

Key Objectives of the Association:
- Awareness: Inform and educate the public about gastroparesis.
- Support Network: Create a supportive community among patients.
- Medical Research: Finance and promote research on this rare disease.
- Practical Help: Collect and distribute nutritional supplements and medical equipment to patients in need.

The president of the Association is Mr. Francis MAZEAU.

We are extremely excited about this collaboration and look forward to working together to actively support patients with gastroparesis.

About MaRDi centers:
MaRDis (Rare Digestive Diseases) are certified reference and competence centers for the management of rare digestive diseases in France and are part of the FIMATHO health network (rare abdominal-thoracic diseases).

Le centre de référence des Maladies Rares Digestives (MaRDI) a organisé sa 2ème Réunion des familles pour les enfants et adultes le 03 Décembre 2022, en présentiel et en visioconférence à l’Hôpital Jeanne de Flandre du CHU de Lille.

40 familles ont pu assister à la conférence et aux activités proposées.

Lors de cet après-midi, le thème "Dire ou ne pas dire sa maladie à l’école ou au travail : quand on est malade ; quand on est aidant "

Pendant le même temps, les enfants ont pu participer à des ateliers culinaires, manuels, et sportifs, animés par l’équipe des MaRDI, les éducateurs, les blouses roses et l’association « Des étoiles dans les yeux ».

La journée s’est terminée par la visite des stands des prestataires (LVL, NHC, Hauts de France Santé, Secuderm, Presta Soins et Service, Hollister) et des associations (AFA Crohn – RCH – France , La Vie par un Fil, Rires et Tapage chez les Hirschsprung, Association des POIC) , goûter et un spectacle pour le plus grand plaisir des enfants : « L’école du Clown » par Rachel Bazoge.

Un replay de la conférence est désormais disponible : accéder au replay

Vous êtes atteint d'une maladie inflammatoire chronique intestinale et vous souhaitez participer à une recherche originale sur les facteurs alimentaires liés aux rechutes de la maladie. Rejoingnez-nous !

Pour plus d'informations :

https://www.fimatho.fr/mardi/recherche/mikinautes

https://mikinautes.fr/