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
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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/