September 23, 2018
by inesp.alves
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The 17th September 2018 was also a very important day for Clara: it was the first day of school. And what a thrill! And before heading to school that morning, there was a very long process of transition. Clara was … Continue reading
October 23, 2017
by inesp.alves
2 Comments
The International Skeletal Dysplasia Society meeting was held in Bruges between the 20th and 23rd September 2017, with the presence of world-renowned geneticists and clinicians with interest in skeletal dysplasias; also some pharmaceutical companies and patients representatives from all around … Continue reading
August 29, 2017
by inesp.alves
5 Comments
From the 20th to the 23rd September 2017, it will take place in Bruges, Belgium, the ISDS meeting. The ISDS is registered as a non-profit organization and the principal aim of the Society is to promote scientific progress in the … Continue reading
July 31, 2017
by inesp.alves
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In 2014, several Reference Centers in France dedicated to diseases involving the same organs, created OSCAR, the French network of rare diseases of bone, calcium, and cartilage. Citing Dr. Geneviève Baujat (Necker-Enfants Malades hospital, Paris) “The aims are to expose … Continue reading
November 7, 2016
by inesp.alves
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In a collaboration initiative between ALPE Foundation, FIMABIS and Dr. Felipe Luna, Head of Orthopedic Surgery and Traumatology at Málaga Central Hospital, Spain, the Second Conference of Malaga Achondroplasia Unit “Around achondroplasia – research for families” will be held in … Continue reading
May 10, 2016
by inesp.alves
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Recently, in the AISAC congress (an italian association for the study and information on achondroplasia), a research project by TIGEM – Telethon Institute of Genetics and Medicine was presented who’s head researcher Prof. Carmine Settembre: “FGF signalling regulates bone growth through … Continue reading
April 15, 2016
by inesp.alves
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Here are presented two leaflets for achondroplasia developed by recognized institutions. The Manchester Centre for genomic medicine developed leaflets for achondroplasia that can be of a good help for the follow up of children, with several information and also specific … Continue reading
April 12, 2016
by inesp.alves
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Kindness for Kids Healthcare Award Deadline: 30 April 2016 “Endowed with 40,000 Euro. The Kindness for Kids Health Care Award is funding projects which aim to help improve the care situation for children with rare diseases sustainably, either through structural … Continue reading
November 27, 2015
by inesp.alves
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The photo “Maia”, from the Asturian photographer Andrés Gómez, has won the first prize in the XIII Contest of Digital Photography “People with disabilities in everyday life”, organized by the Institute for Community Integration (INICO) and the Foundation North Group. A … Continue reading
November 24, 2015
by inesp.alves
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EUPATI is a pan-European Innovative Medicines Initiative (IMI) project of 33 organizations, led by the European Patients’ Forum, with partners from patient organizations, universities and not-for-profit organisations, along with a number of European pharmaceutical companies. The goal is to help patients be more … Continue reading