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Málaga hosts international conference on Menkes disease

The Centre Pompidou in Málaga gathers specialists from ten countries for the MARCO II conference on Menkes disease and copper.

Álvaro Gómez Payo
Álvaro Gómez Payo
· 3 min read

The Centre Pompidou in Málaga gathers specialists from ten countries on September 17 and 18 for the MARCO II conference on Menkes disease, copper, and human health, organised by MICu.

Málaga will be the meeting point for international research on Menkes disease, a rare and severe genetic disorder of copper metabolism, on September 17 and 18. The event, named MARCO II, takes place at the Centre Pompidou and is organised by the Menkes International Association–Copper Rare Foundation (MICu), as reported by Diario Sur.

The conference, in a hybrid format (in-person and online) and bilingual (English and Spanish), brings together speakers from ten countries, including Spain, the United States, the United Kingdom, France, Belgium, Denmark, Germany, and Chile. They come from institutions such as Johns Hopkins University, Texas A&M University, and Emory University School of Medicine, Great Ormond Street Hospital / University College London, CHRU de Nancy, and Genethon, CHU de Liège, Kennedy Center in Copenhagen, or Universidad del Desarrollo in Chile, along with the European infrastructure EATRIS. IBIMA and the Ministry of Health also participate through its general director.

The programme covers topics from copper biology to neonatal screening, genomics, brain resilience, and the lessons learned from diseases like Wilson's disease. Menkes disease is caused by alterations in the ATP7A gene, which prevent the body from properly distributing and using this mineral, involved in cellular respiration, blood formation, and brain function.

One of the projects to be presented is the NPP-Menkes (Named Patient Programme), the experimental treatment access programme coordinated by Menkes International from Málaga. Launched in 2020 and operated at no cost to families, it offers children with this disease an experimental treatment with elesclomol-copper under the authorisation of the AEMPS and other European medicine agencies, backed by the Copperless Committee. It started by treating patients in Spain and Switzerland and is now expanding to other European countries, with ongoing cases in Germany and France.

“That a programme like this is born and coordinated from Málaga says a lot about the scientific and human ambition of the city,” says MICu.

The sessions include round tables on access to medications, philanthropy in rare diseases, and the relationship between the pharmaceutical industry and families, as well as a session on the role of the media with journalists from the EFE Agency and international scientific press, and a closing keynote lecture by the University of Missouri.

“Talking about copper is talking about health, cutting-edge science, and also hope. Bringing the best specialists in the world to Málaga is not just a scientific achievement: it is a promise to families,” says the director and founder of MICu, Aurora Mateos.

The conference reserves specific sessions for affected children and their families, arriving from different countries, with the aim of bringing together all stakeholders involved in a rare disease: families, clinical staff, researchers, industry, and regulators.

Registration can be done for both days, which will be held at the Centre Pompidou in Málaga on September 17 and 18.

Álvaro Gómez Payo

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Álvaro Gómez Payo

Redactor

Ciencias Políticas por la Universidad de Málaga y asiduo de los plenos más largos. Malagueño de pura cepa, cafetero y con paciencia infinita para la burocracia; lleva años contando la política y la sociedad de la provincia.