IPOPI Clinical Care Webinars – year-round PID Education
IPOPI Clinical Care Webinars are aimed at patient group leaders, clinicians and nurses with an interest in PID clinical care management
IPOPI XVI Global Patients Meeting – First ever online!
IPOPI had the great pleasure of welcoming 200 delegates from 40 countries from all over the world to the XVI Global Patients Meeting (GPM).
Two-day IPOPI Regional Asian PID Meeting
IPOPI had the great pleasure of welcoming delegates from 19 countries from the Asia-Pacific region to the virtual IPOPI 3rd Regional Asian PID Meeting, held on September 18-19, 2020. During this well attended online meeting the participants learned from both international and regional primary immunodeficiencies (PID) experts on the latest developments in Asia.
The meeting featured many key speakers, explored topics such as PID diagnosis and care priorities in Japan, SEAPID and APSID updates, transition care and much more. The participants also learned from a discussion on Complex regional clinical care cases, as well as an interactive workshop organised for patient representatives in the region.
The meeting was initially scheduled to take place in Kyoto, Japan, in September 2020, back to back with the JSA/WAO/APAPARI 2020 Congress. After careful consideration of the ongoing spread of COVID-19 worldwide, and in order to ensure the safety of all participants, IPOPI decided to move this meeting online, with a shortened programme.
The report and the videos of the meeting will soon be available here.
Screen4Rare continues advocating for newborn screening for rare diseases!
Screen4Rare, the platform let by IPOPI, the International Society for Neonatal Screening (ISNS) and the European Society for Immunodeficiencies (ESID) has made progress in the past months. As part of its strategy, Scree4Rare has reached out to the European Reference Network for PIDs and other auto-immune and auto-inflammatory disorders (ERN RITA) and to the Reference Network for hereditary metabolic disorders (MetabERN). These two Networks provided their support to the initiative and will be willing to support future work.
The platform has also been in contact with representatives of the European Commission and of the European Parliament to continue raising awareness on the importance of the campaign as well as keeping informed the based of supporters in these institutions.
Stay tuned for upcoming updates through the EU Health Policy Platform where Screen4Rare has become a Stakeholder Network to update the wider community of its progress. More information can be found here.
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