Two PID questions to the European Commission

Two parliamentary questions have been tabled to the European Commission on the implementation of the Primary Immunodeficiencies Principles of Care and on Newborn screening for Severe Combined Immunodeficiency (SCID) as a result of the successful 6th PID Forum organised by IPOPI on the Principles of Care, on 6th December in Brussels.

The Portuguese Members of the European Parliament, José Inácio Faria (liberal group) and Carlos Zorrinho (social-democrat group) have been collaborating with IPOPI to prepare these questions addressed to the European Commission (EC) with the aim of raising awareness on primary immunodeficiencies.

The first question on the PID Principles of Care seeks to introduce the document to the EC, looks for its institutional endorsement and request that future action in the field of rare diseases and PIDs takes into account the recommendations contained.

The second question tabled by the Members of the European Parliament calls on the EC to push for the development of European guidelines on newborn screening for rare diseases, including SCID. The two politicians call for the European institution to support SCID newborn screening programmes across the European Union.

The European Commission is required to answer these questions within the next 6 weeks after their publication. IPOPI will follow the European Commission’s replies and will report on them.

IPOPI launches Burden of Treatment Study with UK Kick-Off

IPOPI is pleased to announce the launch of a new Primary Immunodeficiency Burden of Treatment study in partnership with the University of Sheffield (UK) and a clinical research company, Parexel.

IPOPI is closely working with its National Member Organisations (NMOs) who will help disseminate the questionnaire in eleven countries.

IPOPI’s NMO in the United Kingdom, PID UK, is the first to launch the questionnaire today, Wednesday 27th April 2016, on the occasion of World Primary Immunodeficiency Week. ‘In World PI Week PID UK is delighted to be the first organisation to launch IPOPI’s burden of treatment survey. Understanding and being able to quantify how different immunoglobulin treatments impact the lives of those living with PIDs, and how this varies across the different nations will provide invaluable data to help all NMO’s lobby for equal access to this life-saving treatment for patients” explained Susan Walsh, PID UK Director.

The objective of the Study is to quantify and measure the impact of the different immunoglobulin treatments adults take to manage their PID. “At IPOPI we believe it is important to understand the impact that different immunoglobulin therapies represent in patients’ daily lives to better assess the quality of live these patients actually have. The study will also provide outlooks on how to further improve treatments and enable patient representatives to have quantitative data they can use in their advocacy and educational activities” said Johan Prévot, IPOPI’s Executive Director . The study will soon be launched in other 10 countries and is sponsored by Baxalta.

Should you be a patient in the UK wishing to participate in the study, please refer to Susan Walsh at hello@piduk.org.