Family Story
GENeHOPE was born from a personal and family story. The Fund was created on February 28, 2024, by Jean-Baptiste and Hortense Van Ex, following the loss of their child, Maximilien, who suffered from a genetic disease.
In the face of this tragedy, they came to a striking realisation: despite their cutting-edge expertise, the medical teams supporting them were often studying these diseases in parallel, without structural collaboration or knowledge-sharing.
Determined to make a difference, they decided to create a framework that fosters collaboration in genetic research. This is how GENeHOPE was born: an initiative that began in Belgium and France, with the ambition to gradually expand across Europe.
In just a few months, their commitment garnered widespread support. Three committees were created to ensure the governance of the fund. At the heart of the initiative, the Scientific Committee, co-chaired by Anne De Paepe and Corinne Antignac. The Fund is managed by the King Baudouin Foundation, who ensures the proper management of the Fund and the quality of the selection process.
Today, GENEHOPE has grown beyond its family origins: it is a bridge between researchers, a beacon of hope for families, and a promise for the future of genetic disease research.
Mission
GENeHOPE’s mission is to fund research into genetic diseases in children, by promoting collaboration between genetic research centers. Initially, the initiative brings together the eight Belgian genetic centers and the Imagine Institute in Paris, but has the ambition to expand across Europe.
This approach aligns with the call made by the European Union in 2013, which invited its member states to develop a dedicated action plan for genetic diseases. The goal is to ensure that every patient has equitable access to accurate diagnosis and to offer innovative, specialized, and multidisciplinary care.
By strengthening cooperation among experts, GENeHOPE contributes to improving the quality of life for patients, advancing scientific knowledge, and raising public awareness about genetic diseases.
Governance
The GENeHOPE Fund raises the essential donations needed to initiate new collaborations and strengthen existing ones. To realize its ambition, it chose to be hosted by the King Baudouin Foundation and to structure its governance around three committees.
King Baudouin Foundation
GENeHOPE is hosted by the King Baudouin Foundation, whose expertise in Fund management helps maximise its impact. Each year, the Foundation launches a GENeHOPE call for projects and plays an active role in organising a high level and transparent process that allows to select the most promising genetic research initiatives.
As a major player in international philanthropy, the King Baudouin Foundation also plays a key role in promoting GENeHOPE among individuals and companies, thereby enhancing its visibility and capacity for action.
GENeHOPE Committees
The Scientific Committee
The Scientific Committee is composed of renowned scientific experts from the Belgian genetic research centers and the Imagine Institute (Paris), ensuring the selection of high-quality research projects.
Anne De Paepe
UGent
Co-Chair of the Scientific Committee
Corinne Antignac
Institut Imagine, Paris
Co-Chair of the Scientific Committee
Joris Vermeesch
KU Leuven
Thiago Trovati
Institut Imagine Paris
Marije Meuwissen
UA
Alice Lepelley
Institut Imagine Paris
Béatrice Gulbis
Erasme – ULB
Karin Dahan
College Genetics IPG Loverval
Dimitri Boyan
VUB
Vincent Bours
ULg
Elfride De Baere
UGent
Yves Sznajer
CUSL-UCL
Olivier Devuyst
CUSL-UCL
Nadia Bahi-Buisson
Institut Imagine Paris
The Management Committee
The Management Committee is composed of an independent Chair, the founders of GENeHOPE, a representative of the King Baudouin Foundation, and the Chairs of the Support and Scientific Committees.
Jacques van Rijckevorsel
Chair of the Management Committee
Jean-Baptiste Van Ex
Hortense de Castries
Michèle Sioen
Anne De Paepe
The Support Committee
The Support Committee brings together individuals who are committed to the GENeHOPE cause and determined to advance research.
Michèle Sioen
Chair of the Support Committee
Marnix Galle
Jean-Baptiste Van Ex
Hortense de Castries
Anne de Castries
Henri de Castries
Bénédicte Vande Vyvere
Gaëtan Hannecart
Maximilien de Limbourg Stirum
Roland Stern
Stéphanie van de Werve de Schilde
Tanguy van de Werve de Schilde
Bana Jabri
Stanislas Lyonnet
Fabian De Smet
Jo De Wolf
Valentine Deprez
Nora Stern
Mieke Debeerst
Philippe Masset
Oriane Masset
Véronique Raisière
Ariane Papeians
Bruno Pani
Partners
GENeHOPE is fortunate to count on institutional partners who are essential to fulfilling the mission.
These partners provide the financial stability needed for medium- and long-term research projects, the exploration of new research areas, and innovations in genetics. Their long-standing support is vital for conducting in-depth studies and testing treatments, leading to major advances in understanding rare genetic diseases.
These partners also create opportunities by fostering synergies between public and private stakeholders, reinforcing collective efforts to accelerate research and the development of solutions.
Their commitment strengthens the legitimacy of the Fund and ensures a comprehensive and sustainable approach to these challenges.
Supporting the fund allows them to contribute to a societal cause, enhance their corporate social responsibility image, collaborate with key stakeholders, and influence public policy. Finally, it opens the door to strategic partnerships and business opportunities in rapidly growing sectors such as biotechnology and precision medicine.
