The EJP RD is glad to invite you to the information webinar organised for potential applicants to the Joint Transnational Call 2021 on “Social Sciences and Humanities Research to Improve Health Care Implementation and Everyday Life of People Living with a Rare Disease”.
In the context of the EJP RD internal call for innovation projects in clinical trials methodologies in limited populations, that opened on 7th of December 2020 and will close on 3rd of March 2021, an “Information/Networking Event” will be organised on the 25th of January 2021. The meeting will take place online from 15:00 to 18:30.
The objective of the EJPRD policy meeting is to kick off the discussion on the future Rare Diseases Partnership under Horizon Europe (HE).
The Manifesto invites the people of Europe to engage in building a health policy that contributes to the long-term sustainable development of the European Union. The Manifesto sets out a vision of a European Health Union (with goals, policies, measures, principles) developed by the signatories of the Manifesto.
A meeting on INTERNATIONAL REGISTRY OF COVID-19 IN PEOPLE WITH RARE DISEASES organised by Share4Rare will take place on Wednesday 9 December 2020 at 14:00 CET.
The 16th International Symposium of the Portuguese Society for Metabolic Disorders (SPDM) | “New Horizons in Inborn Errors of Metabolism”. This year, the Symposium will take place in a fully virtual meeting, from the 11th to the 13th November. Starting a new decade and under the motto “New Horizons in Inborn Errors of Metabolism”, we aim to bring you the most recent scientific advances and to inspire new approaches to Inherited Metabolic Disorders, with the participation of world experts.
MetabERN agrees and endorses the principles of the manifesto for EU COVID-19 research when dealing with research results stemming from EU funded research grants related to COVID-19 on prevention (including vaccines), testing and treatment
Emergency situations are a major burden for many IEM-patients and their families. Having an emergency letter and knowing how to use it can prevent life-threatening situations and will optimize communications between parents and doctors.
The IMI conect4children (c4c) consortium is pleased to announce that the first site is now open for the ‘Kawasaki Disease Coronary Artery Aneurysm Prevention trial (KD-CAAP)’ study as of 28 September 2020 at Great Ormond Street Hospital NHS Foundation Trust.
Join this interesting webinar on the topic of Fabry and the Brain, which is taking place on September 21st from 16:00-17:30.