[give_form id="30"]
About us
Cure MVID
The Cure MVID Association is a 1901 law association whose main aim is to find a therapy for Microvillus Inclusions Disease (MVID) while improving the lives of patients and their families.
This is a rare genetic disease that affects the normal functioning of the intestine in children from birth. The association was created in 2023 by a family affected by this disease.
We are a diverse team of families and their supporters, scientists and healthcare professionals dedicated to putting an end to MVID. Our vocation is to foster partnerships between doctors, researchers, associations and industrial partners in order to share knowledge about the disease and create synergies to raise awareness of this rare genetic disorder and, above all, identify therapeutic strategies.
We believe that through our work, we will accelerate the development of therapies that will put an end to Microvillous Inclusion Disease.
When their first child was born in 2022, the parents - and founders of theCure MVID Association- noticed right from the start that something was wrong: the baby, just a few days old, wasn't gaining weight, and was even losing it. Diarrhoea set in within a few days, and the child was becoming dehydrated.
After more than 1 month of hospitalization and transfer to the Necker Hospital Enfant Malade (Paris, France) the diagnosis was made: Familial Hemophagocytic Lymphohystiocytosis with mutation of the STXBP2 gene which also causes MVID (learn more about the link between FHLH and MVID via the STXBP2 mutation).
The only cure for FHLH is hematopoietic stem cell transplantation (or bone marrow transplantation) which is a risky but necessary procedure for healing. After more than 8 months of hospitalization and an epic battle against the immune disease, it's finally back home.
But since the STXBP2 gene also causes MVID, parents had to be trained in parenteral nutrition at home because transplantation does not cure MVID and no treatment currently exists.
For the majority of MVID patients, total parenteral nutrition is necessary for life, as there is no treatment available to wean themselves off this disease.
The Cure MVID Association aims to encourage the emergence of a treatment for all MVID patients dependent on parenteral nutrition, so that they can finally return to a normal childhood life.
Our mission
Boosting research into MVID
The aim of our association is to fund and support clinical and scientific research into MVID and to improve care practices.
Our vocation is to foster partnerships between doctors, researchers, associations and industrial partners in order to share knowledge about the disease and create synergies to raise awareness of this rare genetic disorder and identify therapeutic strategies.
The Cure MVID Association is a member of various national and international networks set up to improve the management of rare digestive diseases and promote research into these diseases.
MaRDi (Maladies Rares Digestives) centers are accredited centers for the treatment of rare digestive diseases.
These centers work as part of a network of medical experts, medico-social professionals and patient associations, to improve diagnosis and care, optimize care pathways, organize therapeutic education and promote research into these diseases.
The national network for rare abdomino-thoracic diseases
The FIMATHO health network was set up by the French Ministry of Health and Prevention. It leads and coordinates a network of players involved in the management of rare abdomino-thoracic diseases in children and adults.
Its aim is to strengthen links between health professionals involved in research, diagnosis, monitoring, training and the voluntary sector, and to harmonize and coordinate all their actions nationwide.
ERNICA is the European Reference Network for rare hereditary and congenital anomalies (digestive and gastrointestinal).
ERNICA is a network of expert, multidisciplinary healthcare professionals from specialized healthcare facilities across Europe. The network was officially launched in March 2017. ERNICA is coordinated from the Erasmus MC in Rotterdam, the Netherlands.
Affiliated Association
