Sesión virtual para pacientes y familias dedicada al proyecto sobre EB de Rare Commons
Sesión virtual para pacientes y familias dedicada al proyecto sobre EB de Rare Commons
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DEBRA International
- May 7, 2021
- 2 min
Take part in an international research study on burden and resources in EB - online survey
Take the survey in English: https://survey.sfu.ac.at/EB2021/?q=E_Qnr Take the online survey in German: https://survey.sfu.ac.at/EB2021/?q=D_Qnr Since summer 2019, Dr Gudrun Salamon, researcher in the faculty of psychology at the Sigmund Freud University Vienna has been leading a research team of six people on the project of "Burdens and helpful aspects for achieving and maintaining quality of life with epidermolysis bullosa". In cooperation with DEBRA International, DEBRA Aus
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DEBRA International
- Apr 22, 2021
- 2 min
Únete a Rare Commons para compartir tus experiencias y ayudar a mejorar el conocimiento de la EB
Rare Commons es un proyecto de investigación del Hospital Sant Joan de Déu de Barcelona que se centra en el estudio biomédico de las enfermedades raras que afectan a niños. En colaboración con DEBRA España, se ha incluido la epidermólisis bullosa (EB) en la lista de enfermedades. La iniciativa se basa en una plataforma online que permite la interacción de los usuarios (pacientes/cuidadores y médicos) en español para conseguir mejorar el conocimiento científico de la enfermeda
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DEBRA International
- Mar 13, 2021
- 2 min
People with EB in Brazil have the opportunity to access genetic sequencing tests free of charge
With 28th February 2021 marking Rare Disease Day, DEBRA Brasil and Illumina have joined forces to launch a pioneering and high impact initiative involving 400 people with EB in Brazil. Genetic testing is the gold standard diagnostic test for rare diseases, where in Brazil access is restricted due to the high financial cost for most people. The DEBRA Brasil team, which is at the forefront of contact with families and people with EB, has a clear understanding of the importance
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DEBRA International
- Mar 5, 2021
- 2 min
We welcome DEBRA Belarus as one of our three new member groups
DEBRA International is delighted to welcome DEBRA Belarus as one of its newest member groups. The Republican Public Association for Aid to Patients suffering from epidermolysis bullosa - DEBRA Belarus was created in Belarus in 2020, in April. Our association is a non-profit organization and its members do pro bono work. The association includes the patients suffering from EB, the parents of the children with EB, and those in our country supporting us. There are 116 people wit
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DEBRA International
- Feb 1, 2021
- 2 min
We welcome the Yasmin El Samra Foundation - DEBRA Egypt as one of our three new member groups
DEBRA International is delighted to welcome the Yasmin El Samra Foundation - DEBRA Egypt as one of its newest member groups. My name is Hanaa Elsadat, mother to four children (three sons and a daughter) and I live in Cario, Egypt. Yasmin Elsamra, my daughter, was born in 1997 with epidermolysis bullosa (EB). Yasmin tried to lead a normal life despite her disease. At the age of 5, we discovered her talent in drawing and encouraged her first drawing exhibition at the age of 9.
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