Interview to Àngels Puigvert — Mother of a girl with megalencephaly-capillary malformation syndrome
Àngels Puigvert's life is anything but calm, but he was able to find some time to answer some questions about her daughter and the work carried out by her association. Thank you Àngels! " Queralt was
The burden of melanoma and why we need patient-driven research
Bettina, thank you for taking the time for this interview today. MPNE is one of the Share4Rare project partners and is launching a research project into the burden of melanoma on the platform. Could
Meeting the partners — World Duchenne Organization
The World Duchenne Organization (WDO) is one of the two patient organisations joining Share4Rare as project partner. Dimitrios Athanasiou, WDO board member and father of a boy with Duchenne, did not
Wednesday is Share4Rare User Day
In 2020 hundreds of people from 50 countries were connected in the Share4Rare community. The pandemic has forced us to include technology in our day to day life and you may have some doubts about the
Report - 3rd day of the International Congress on the Effects of COVID-19 in People with Rare Diseases
The challenge of undiagnosed patients: challenges and needs Dr. Marcelo Andrade opened the first table of the third day of the congress. This paediatrician at the Sant Joan de Déu Hospital explained
Report - 2nd day of the International Congress on the Effects of COVID-19 in People with Rare Diseases
Emotional support to the affected people: the role of patient organizations and virtual communities Roberta Anido de Pena (president of FADEPOF) opened the session with a panel that discussed the role
Report - 1st day of the International Congress on the Effects of COVID-19 in People with Rare Diseases
The opening of the congress was led by Patricia García, medical director of the Garrahan Hospital, a reference centre for rare diseases in Argentina. García explained the challenge that COVID-19
An Interview with Marjolein van Kessel — President of Naevus Global
Thank you, Marjolein, for taking the time to be interviewed! Could you please give us a bit of background about congenital melanocytic naevi and the issues associated with them? A congenital
International Congress on the Effects of COVID-19 on People with Rare Diseases
The International Congress on the Effects of COVID-19 on People with Rare Diseases will be held on November 9-11 th 2020 and it is organized by the Sant Joan de Déu Barcelona Children's Hospital
World Duchenne Awareness Day: "Together, we are stronger"
This year's awareness campaign ‘ Together, we are stronger ’ was translated in 15 languages and collected over 1,000,000 views globally. This impressive number was reached due to an amazing
Data for a difference — The Share4Rare research feature for patient organisations
Violeta Astratinei is a Ph.D. biologist with a background in environmental research. After she lost her sister to melanoma in 2014, she became a core member of Melanoma Patient Network Europe, MPNE
Gemma Marfany: "Researchers, patients and families must come together to fight rare diseases"
Gemma Marfany is a professor in the Department of Genetics at the University of Barcelona (UB) and head of Unit U718 at CIBERER, the Spanish biomedical research centre for rare diseases. She is also a