SAFE Task Force releases two position statements

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The Supply and Access for Everyone (SAFE) Task Force and IPOPI are happy to share with IPOPI’s members two position statements on 2 key topics of relevance to patients with PIDs worldwide:

These two papers aim at being used by NMO representatives in their advocacy work on access to immunoglobulin replacement therapies.

The SAFE Task Force, was launched by IPOPI in 2020 to monitor plasma collection and the availability of immunoglobulin replacement therapies for patients with PIDs worldwide, as well as provide guidance and support to patients with PIDs in their access to live-saving immunoglobulin therapies.
The taskforce is composed of experts from different parts of the world and IPOPI staff (in alphabetical order): Ms Roberta Anido de Pena, Ms Jose Drabwell, Dr Nahla Ewra, Prof Stephen Jolles, Dr Nizar Mahlaoui, Ms Martine Pergent, Mr Johan Prevot, Prof John Seymour, Prof Surjit Singh, Ms Leire Solis.

Screen4Rare organises two milestone meetings

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February 2021 was a very busy month for the coalition Screen4Rare (S4R), with the celebration of 2 high-level meetings.

On February 11, S4R convened a round table to discuss newborn screening for rare diseases and how the European Reference Networks (ERN) could contribute to a EU-wide approach to newborn screening. The meeting was facilitated by the European Commission and led by Screen4Rare alongside with representatives from ERN-Rita and MetabERN. The meeting started with the revision of the Screen4Rare campaign and an agreement was reached to develop an ERN initiative on newborn screening for rare diseases that could coordinate future ERN action on the topic.

On February 24, a political meeting, organised by Screen4Rare and co-hosted by MEP Manuel Pizarro (S&D, Portugal) and MEP Sirpa Pietikäinen (EPP, Finland) gathered representatives from the European Commission, EU Member States, Members of the European Parliament, European References Networks (ERNs) and patient organisations. The meeting aimed at discussing the practical implementation of a European approach to newborn screening for rare diseases through an in-depth discussion regarding the various calls contained within Screen4Rare’s Call to Action. Several agreements were reached on how to proceed in the next steps, covering: funding opportunities, the possibility of creating a European Standing Committee on newborn screening for rare diseases and its debate by Member States and the Commission (at the Steering Group for Health Promotion and Prevention (SGPP)).

All in all, February was a very active month for the initiative that brings together the International Patient Organisation for Primary Immunodeficiencies (IPOPI), the International Society for Neonatal Screening (ISNS), and the European Society for Immunodeficiencies (ESID) aiming to exchange knowledge and best practices on NBS for rare diseases. The group’s ultimate objective is to ensure that all babies born in the EU can have equal access to newborn screening. Since February, the coalition has pursued its activities of introducing the initiative to European Member States and enlarge its pool of supporters at European level.

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

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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 Call to Action NBS – Screen 4 Rare.