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
The Share4Rare research project on neuromuscular rare diseases: analysing how the disease affects employment and education
The Share4Rare platform is growing in strength, with over 900 users validated since April 2019. This growing community of rare disease patients and families is providing a secure environment for
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
The international patient registry for COVID-19 and rare diseases is now available for clinicians
People with a rare disease are vulnerable, but this vulnerability is currently being exacerbated by the global COVID-19 pandemic. Sant Joan de Déu Barcelona Children’s Hospital, together with the Sant
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
Meeting the partners — Òmada Interactiva
The approach of Òmada was classic, yet revolutionary. After conducting a preliminary analysis and benchmarking, the initial graphic, functional and technological design of the open layer of the
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
Duchenne Patient Academy 2020: a leading worldwide patient advocacy event on neuromuscular conditions
Duchenne Patient Academy works in partnership with leading DMD patient organisations to set a strong patient advocacy base for patient organisations and the Duchenne and Becker community at large. We
Dr. Marcelo Andrade: "Our intention is to include patients, families and health professionals from around the world in the registry of COVID-19 and rare diseases"
Through collaboration between Sant Joan de Déu and Garrahan Hospital, an ambitious project that connects COVID-19 and rare diseases has been developed. The initiative has supported the creation of a
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 9-11th 2020 and it is organized by the Sant Joan de Déu Barcelona Children's Hospital
The EMA launches a public consultation on registry-based studies
A few weeks ago we published a blog explaining what a patient registry was. These databases enclose quantitative and qualitative data about patients who affected by a particular condition, like for
Lessons learned: Share4Rare’s new Digital Informed Consent
All around the globe, 2020 has brought with it a lot of downs. However, it has also brought some very valuable ups, mainly in the form of lessons learnt and powerful insights into what we are capable