Rare Voices Australia (RVA) will host a small group discussion on lessons learned and successes on the road to advocating for Australia’s national plan. The meeting is particularly designed for patient advocates. Please be ready to ask questions and be part of a conversation on this important topic. ONLINE
Taking place in Rome, Italy, and with a virtual attendance option for those around the world, The International Scientific Symposium on the Ehlers-Danlos Syndromes (EDS) and Hypermobility Spectrum Disorders (HSD) is a state-of-the-art meeting in which new research on clinical advances and the molecular and pathogenic mechanisms underlying EDS and related syndromes will be discussed.
The 1st WORLD PATIENTS CONFERENCE, organised by The World Patients Alliance, will provide patients the platform and opportunity to network, exchange information, share experiences, learn from each other, raise your voice, and advocate for patients cause internationally.
The 3rd annual ministerial meeting on Universal Health Coverage: Investing in #health systems strengthening for UHC through a primary healthcare oriented approach. ONLINE
The aim of the International Human Gene Therapy Conference is to bring together all the key stakeholders interested in genetics and gene therapy to share and discuss advances and developments in these fields. Therefore we aimed at assisting academicians, business executives, researchers, scientists, manufacturers, gene therapy companies, communities, and agencies to keep on new developments […]
Burgos, España. Del 27 al 30 de septiembre de 2022. El programa contempla conferencias, talleres y mesas redondas, y será un lugar de encuentro entre las asociaciones de pacientes de los THTC en Latinoamérica y España. Lema: Tejiendo redes. hashtag: #THTC2022 web: https://conectiva.lat/evento/THTC2022
As part of WHO ICD-11 webinar series, the Classifications and Terminologies Unit in collaboration with the Healthier Populations Division at WHO and Rare Diseases International is organising an ICD-11 webinar that will be held on September 27th, 2022. ONLINE. An Event co-organised by the WHO and Rare Diseases International.
The webinar will consider some market characteristics (e.g. information asymmetry and market power) common in different sectors, with a view to exploring thoughts about the roles of governments in managing the transparency of pharmaceutical prices.
Join us for a UHC Day campaign kick-off call on 29 September at 9 a.m. ET, where we will reveal this year’s UHC Day theme, share opportunities to engage with this year’s campaign, and discuss exciting new #HealthForAll partnerships.
There are multiple barriers to rare disease diagnosis, including access to testing technologies, availability of knowledgeable health care providers, and lack of uniformity of the phenotype for a given genotype or disease-causing agent. These barriers significantly lengthen the time between detection of a rare disease and its diagnosis, aptly called the diagnostic odyssey. The collection […]
