First EJP RD General Assembly
ReadSummary of Edition of 01 October 2019
Editorial
Political news
International News
Establishing the technology, policy, and procedures for a scalable genomic research network
ReadChina: Evaluation of healthcare service and health security of rare diseases patients
ReadSouth Korea: Algorithms for the diagnosis of inflammatory bowel disease
ReadJapan: Arguing against the depiction of Japan as an “HTA-underdeveloped country”
ReadScreening and Prenatal Diagnosis
Challenges and factors influencing the expansion of newborn screening programmes
ReadQuality of Life
Evaluation of the quality of life of children and parents of children with achondroplasia
ReadHealth-related quality of life of Chinese patients with hereditary angioedema
ReadPsychological quality of life of patients with aneurysms-osteoarthritis syndrome
Read
Engagement in leisure activities of people affected by pemphigus
ReadImpact of autonomic dysfunction on quality of life of patients with hereditary transthyretin amyloidosis
ReadImportance of children reports for health-related quality of life
ReadDisease activity patient reported measure via mobile phone app
ReadScientific news
And also...
Credits
OrphaNews, 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: Claire Bernard
Scientific monitoring: Hélène Jagline
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Editorial Board: Victoria Hedley, Yann Le Cam, Charlotte Rodwell, Anna Bucsics, Franz Schaefer, Ivana Cattaneo
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