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Upcoming IPOPI 3rd Regional Asian PID Meeting

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IPOPI is thrilled to organise the 3rd Regional Asian PID Meeting virtually on September 18-19. In this online meeting the participants will enjoy the opportunity to learn from both international and regional PID experts, and further their knowledge of the latest development for primary immunodeficiency in the Asian region. We look forward to welcoming patient representatives and health care professionals from 16 countries in the region.

The meeting will feature many appreciated speakers, exploring topics such as PID diagnosis and care priorities in Japan, SEAPID and APSID updates, transition care and much more. The participants will also learn 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 to the JSA/WAO/APAPARI 2020 Congress. However, after careful consideration of the ongoing spread of COVID-19 worldwide and in order to ensure the safety of all participants we have decided to move this meeting online, with a shortened programme. We now instead look forward to organising a great meeting featuring the latest in PID treatment and care, packaged in a new online format.

Our in-person doctor and patients’ meetings are a very important part of our activities and moving the meeting online is a way to ensure that we can all still come together, interact and discuss the priorities of our community.

More info about the meeting is available here.

 

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Screen4Rare continues advocating for newborn screening for rare diseases!

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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.

 

IPOPI Clinical Care Webinars – year-round PID Education

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IPOPI Clinical Care Webinars are aimed at patient group leaders, clinicians and nurses with an interest in PID clinical care management

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Newborn screening for rare diseases campaign continues with Screen 4 Rare!

The multi-stakeholder campaign led by IPOPI, the International Society for Neonatal Screening (ISNS) and the European Society for Immunodeficiencies (ESID) continues strengthening itself. As part of the strategy, the group decided to build on the achievements reached and create Screen 4 Rare.

Screen 4 Rare is a multi-stakeholder initiative launched by IPOPI, ISNS and ESID aimed at exchanging knowledge and best practices on NBS for rare diseases. Its ultimate objective is to ensure all babies born in the EU can have equal access to NBS which can be a life-saving tool for conditions such as SCID. The initiative has gone live as a Stakeholders Network on the EU Health Policy Platform, a platform developed by the European Commission aimed providing an interactive tool to stakeholders so they can share knowledge and information on their domain, in this case, newborn screening for rare diseases.

This important milestone builds on a series of achievements reached by the campaign such as having a Call to Action on newborn screening for rare diseases that has gathered the support of 30 Members of the European Parliament or a successful event in December 2019 at the European Parliament in Brussels (Belgium). More information can be found here.