IPOPI (International Patient Organisation for Primary Immunodeficiencies)

Noticias de International Patient Organisation for Primary Immunodeficiencies

1. Screen4Rare and MEP Alliance for Rare Disease Newborn Screening

   

   The meeting report is now available

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2. AGORA: New consortium for improved gene therapy access in Europe

   

   IPOPI was pleased to represent the PID patients’ community at the first meeting of the AGORA (Access to Gene therapies fOr RAre disease) consortium. The new consortium, launched on September 22, aims to facilitate access to gene therapies for patients with ultra-rare diseases, in Europe. The meeting was held at London’s Great Ormond Street Hospital […]

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3. IPOPI welcomes the Commission’s proposal for a Regulation on Substances of Human Origin

   

   The International Patient Organisation for Primary Immunodeficiencies (IPOPI) welcomes the European Commission proposal for a Regulation on standards of quality and safety for substances of human origin (SoHO) intended for human application published in July 2022. IPOPI is pleased that this proposal effectively provides: recognition of the importance of patient safety and the need for […]

   The post IPOPI welcomes the Commission’s proposal for a Regulation on Substances of Human Origin first appeared on IPOPI.

4. International Neonatal Screening Day (INSD) website comes to life!

   

5. Recomb is developing promising gene therapy for RAG1-SCID