On-line interpreting during the webinar on the role of genetics in rare diseases

Posted on by

Share4Rare is a European project that aims to contribute to improving the quality of life of people living with rare (minority) diseases and their families. To this end, a community has been created to bring together the entire rare disease ecosystem to ultimately create impact.

To celebrate Rare Disease Day on 28 February, Share4Rare has launched a series of activities throughout the month, and on 4 February it was a pleasure to facilitate communication between patients, families, caregivers and associations and geneticists Gemma Marfany and Lluis Montoliu, who answered many questions raised during the webinar dedicated to the role of genetics in the diagnosis of rare diseases, using clear and accessible language for everyone listening.

 

On-line interpreting during the International Congress on the Effects of COVID-19 on People with Rare Diseases

Posted on by

In order to specifically address the impact of the current pandemic on people affected by minority diseases, the HSJD in Barcelona has organised a three-day international congress in collaboration with the Juan P. Garrahan Hospital in Buenos Aires.

Thanks to the recent creation of an international registry of patients with rare diseases and COVID-19, this congress, aimed at both the scientific community and patients and families, seeks to improve current knowledge of the effects of this new disease on these patients.

The congress is also part of a very active platform of the social network of the Hospital Sant Joan de Déu, Share4Rare, which allows patients with minority diseases, their families and carers, health professionals and researchers to exchange experiences and knowledge in order to promote research in this area.

Conference interpreter during the San Sebastian Film Festival

Posted on by

Johnny Depp has presented this weekend in San Sebastian, in the framework of the Festival, the film ‘Crock of Gold’, a film in which as a producer he narrates the life of his friend, composer and Irish poet Shane MacGowan, under the direction of Julien Temple.

Depp’s intention with this documentary is that the public will definitely know who Shane MacGowan is and what his legacy is.

The actor referred to his Irish friend “as one of the greatest poets of any period in history and a special person”. Depp praised his partner during the press conference: “I’m lucky to know that kind of greatness, I fell in love with him from the very first moment. He is not interested in beeing a celebrity. He is irreverent, stubborn, biting and funny” he added.

Depp is in the film itself with MacGowan, first drinking with him and then playing the guitar at the tribute concert he and celebrities like Bono, Nick Cave and Bobby Gillespie gave him. The director Julien Temple, who has directed the documentaries of the Sex Pistols, The Rolling Stones and Marvin Gaye, explains that he was interested in guiding this production “so that the children know and understand what has happened between Ireland and the United Kingdom”.

On the other hand, Florian Zeller, a brilliant novelist and dramaturg whose work has been translated into several languages, has presented “The Father”, an adaptation to the big screen with which he makes his debut as a director.

The Father’ tells the story of Anthony (Anthony Hopkins), a man of almost 80 years of age who lives alone in his London flat and who refuses every nurse that his daughter, Anne (Olivia Colman), hires to help him at home. Anne is desperate because she can no longer visit him on a daily basis and feels that her father’s mind is beginning to fail and she is becoming more and more disconnected from reality. As the plot progresses, however, Anne’s father will begin to doubt his loved ones, his own mind.