The Menkes Network
An international network of volunteers — families, doctors, researchers and organisations — united to fight Menkes disease across borders.
Our Network
Our platform relies upon an international network of volunteers who share their expertise to ensure the research moves forward and the information flows. The network also provides a support system to affected families.
The network is administered by the Menkes International Association (MIa), registered under Spanish Law 1/2002 in Málaga, Spain, and certified by the official registry of Associations in Spain.
Executive Board
Aurora Mateos
Founder and Director
Denis Broun
Medical Director
Former Head of UNICEF Health Section; Former Director of Resource Mobilization, WHO
Tote Portillo
Secretary
Vicente Mateos
Treasurer
Andrey Galaev
Board Member
Former Director, Sakhalin Energy
Vinay Saldanha
Board Member
United Nations — UNAIDS Regional Director, Eastern Europe
Leonardo Cervera Navas
Board Member
Director, European Data Protection Supervisor
Jean-François Pulvenis
Board Member
International Lawyer; Former FAO Director and Diplomat
Scientific Advisors & Researchers
Nina Horn
Kennedy Center, Copenhagen
Francesc Palau
Hospital Sant Joan de Déu, Barcelona
Michael Petris
University of Missouri, School of Medicine
Elisabeth de Lange
Leiden University
James Sacchettini
Texas A&M University, USA
Raphaël Rodriguez (FRSC)
Institut Curie, Paris, France
Merce Capdevila
Universitat Autònoma de Barcelona
Vishal Gohil
Texas A&M University, USA
Natalia Serrano
Engrail Therapeutics
Elena Godoy
Hospital Materno-Infantil de Málaga, Spain
Prachi Trivedi
Texas A&M University, USA
Julian Mercer
Deakin University, Melbourne
Bibudhendra Sarkar
SickKids Hospital, Toronto
Joseph Standing
UCL Institute of Child Health
Svetlana Lutsenko
Johns Hopkins University, USA
Stephanie Lotz
Hospital Sant Joan de Déu, Spain
Victor Mangas
University of Valencia, Spain
Christos Papageorgiou
University of Missouri, USA
Uros Hladnik
Head of laboratories at 'Mauro Baschirotto' Institute for Rare Diseases
Andrey Flores
Hospital de Especialidades Pediátricas del CRAE, Mexico
Roman Polishchuk
TIGEM, Pozzuoli, Italy
Diego Martinelli
Bambino Gesù Hospital, Rome
Josep Suñé
Universitat de Barcelona
Lisbeth Birk Møller
Kennedy Center, Copenhagen
Zeynep Tümer
Rigshospitalet, Copenhagen
Dennis J. Thiele
Sisu Pharma, Inc
Associated Institutions
Hospital Pediátrico Bambino Gesù
Rome, Italy
Texas A&M University
Texas, USA
Hospital Sant Joan de Déu
Barcelona, Spain
Kennedy Center
Copenhagen, Denmark
National Member Charities
- Menkes Spain — Fundación Amigos de Nono
- Menkes Argentina (AMA)
- Menkes Brazil
- Menkes Chile
- Menkes Colombia
- Menkes France — Nos Enfants Menkes
- Menkes Italy — Angeli per la vita
- Menkes Mexico
More national associations are joining the network. Contact us if you represent a national Menkes organisation not listed here.
Godparents
Yusuf Hamied
Philanthropist and CEO, CIPLA Therapeutics
Carlos Alvarez
Acclaimed Spanish baritone
Jean-François and Karin Pulvenis
International Lawyer; Former FAO Director and Diplomat
Rocío Calvo
Neuro-paediatrician
Sofía Valero
Psychotherapist
Natalia Jaraba
Expert On Public Health
Belén Martínez
Researcher
Beatrice Paola Festa
Postdoctoral Researcher, University Of Cambridge
Rafael Perez Castillo
PhD, Legal Adviser On Non-Profit Organizations
Join the Network
Are you a researcher, physician, or national charity working on Menkes disease?