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 Clinical Care Webinars are aimed at patient group leaders, clinicians and nurses with an interest in PID clinical care management
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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 Call to Action NBS – Screen 4 Rare.
UK
Rocky Bottom, Trerieve, Downderry, PL11 3LY, UK
IPOPI is a non-profit charity registered in the UK
Charity number 1058005
Belgium
Avenue Louise/Louizalaan 367
BE-1050 Brussels, Belgium
IPOPI aisbl is an international non-profit association registered in Belgium
Numéro d’entreprise
BE 0761.784.055
Portugal – Executive office
Av. Aida, Bloco 8, escritório 821
2765-187 Estoril, Portugal
Email: info@ipopi.org
Tel: +44 1503 250 668/961 (UK)
+351 21 407 5720 (Portugal)