The European Joint Program on Rare Diseases (EJP-RD) up and running
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New collaboration between International Clinical Trials Registry Platform and Orphanet
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New collaboration between International Clinical Trials Registry Platform and Orphanet
ReadNew European Platform to collect rare disease patient data launched
ReadReport from the first Workshop on Ancient Rare Diseases
ReadA new local framework for Huntington disease was launched in the Lothian region
ReadUK strategy for Rare diseases implementation plan for England update
ReadNew Oxford-Harrington Rare Disease Centre for therapy development
ReadBupa Malta awards
ReadLaunch of PARTNER project for Paediatric Rare Tumour patients
ReadNovel European Registry Society Clinical Research Collaboration for alpha-1 antitrypsin deficiency
ReadOrphan designation and positive Health Technology Assessment outcomes
ReadSocial media data for pharmacovigilance
ReadCollaborating to overcome regulatory obstacles
ReadOrphan drug patient access in France: still incomplete
ReadDevelopment of effective drugs for Mucopolysaccharidosis, Gaucher, Fabry and Pompe disease in Spain.
ReadClinical trial design for systemic lupus erythematosus
ReadData fusion and collaborative filtering approaches to assist rare disease diagnosis
ReadShedding light on the decision “not to know” and not seek for pre-symptomatic testing
ReadSpouses’ experience of living with a partner with a rare disease
ReadDepression and anxiety in patients with rare diseases
ReadChallenges of living with a rare disease
ReadLink found between Health Related Quality of Life surveys and rates of subsequent emergency room department visits and
ReadZellweger spectrum disorders and the emotional experience of family caregivers
ReadDo repeated surgeries in the case of recurrent respiratory papillomatosis impact patients’ voice outcomes?
ReadBurden of severe mucopolysaccharidosis type I on caregivers
ReadOrphaNews, The Newsletter for the Rare Diseases Community.
OrphaNews is supported by the European Commission through the pilot projet 'Rare 2030 - a participatory foresight study policy-making rare diseases' (PP-1-2-2018-Rare 2030).
Editor-in-chief: Ana Rath
Associate Editor: Charlotte Rodwell
Editor: Florent Simon
Editor for Scientific Content: Agathe Franck
Scientific monitoring: Hélène Jagline
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Editorial Board: Victoria Hedley, Yann Le Cam, Charlotte Rodwell, Anna Bucsics, Franz Schaefer, Ivana Cattaneo
ADVISORY EDITORIAL BOARD
Orphanet Partner Country Representatives: Romi Armando (Argentina), Kristine Hovhannesyan (Armenia), Hugh Dawkins (Australia), Till Voigtlander (Austria), Rumen Stefanov (Bulgaria), Micheil Innes (Canada), Ingeborg Barisic (Croatia), Marios Antoniades (Chyprus), Milan Macek (Czech Republic), Vallo Tillmann (Estonia), Helena Kääriäinen (Finland), Susanne Morlot (Germany), Eileen Treacy (Ireland), Annick Raas-Rothschild (Israel), Bruno Dallapiccola (Italy), Atsuhiko Kawamoto (Japan), Ieva Malniece (Latvia), Birute Tumiene (Lithuania), Abdelaziz Sefiani (Morocco), Gert-Jan van Ommen (Netherlands), Stein Are Aksnes (Norway), Krystyna Chrzanowska (Poland), Mario Carreira (Portugal), Cristina Rusu (Romania), Dragica Radojkovic (Serbia), Laszlo Kovacs (Slovakia), Luca Lovrecic (Slovenia), Francesc Palau (Spain), Désirée Gavhed (Sweden), Loredana D'Amato Sizonenko (Switzerland), Dorra H’mida-Ben Brahim (Tunisia), Sarah Stevens (UK)
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