May 19, 2011

IPOPI co-organizes first Primary Immunodeficiency Patients Meeting in Lisbon, Portugal

Portuguese patients and Primary Immunodeficiencies (PID) stakeholders including doctors, nurses, industry representatives and the Portuguese Rare Diseases organisation came together for the first time at the National Faculty of Medicine in Lisbon on 23 October to discuss issues facing people living with PID in Portugal.

The meeting which was jointly organised by the International Patient Organisation for Primary Immunodeficiencies (IPOPI) in cooperation with the Portuguese Society for Immunodeficiencies (Grupo Português de Imunodeficiências Primárias - GPIP) and the Portuguese PID Patient Association (Associação Portuguesa de Doentes com Imunodeficiência Primária - APDIP) was very successful and brought together over one hundred participants coming from all regions of the country.

The meeting was opened by Dr Susana Lopez da Silva from Santa Maria Hospital in Lisbon and Dr Emilia Faria from Coimbra University Hospital who both chaired the meeting and welcomed participants. Dr Laura Marques from Maria Pia Hospital in Porto highlighted the current challenges facing Primary Immunodeficiency patients in Portugal from the physician perspective, amongst which the need for better diagnosis rates for adults and more equal access to care whilst also pointing out challenges for the future such as gene therapy.  Jose Israel Silva the outgoing Chairman of the APDIP provided a presentation on the challenges for patients and an overview of the APDIP’s activities.  He particularly stressed the need for raising awareness on PID in Portugal, Madeira and the Azores and developing patient information materials but also stressed the fact that PID is not recognized currently as a chronic disease in Portugal. This means that PID patients in Portugal do not have access to the level of support ‘officially recognized ‘chronic patients would normally be entitled to access, such as greater flexibility in the workplace allowing for days off to access treatment,  retail pharmacy discounts, etc. In his presentation on international developments Johan Prevot, IPOPI, reviewed the recent success stories for the PID patient community such as the recent European Parliament recommendations on PID, the work with PLUS but also IPOPI’s increasing activities at the international level in regions such as Eastern Europe, Latin America and Africa.  The programme closed with a presentation by Mrs Paula Brito e Costa, President of the Rare Diseases Federation (Rarrissimas) on the activities of the rare diseases organisation in Portugal.

The scientific programme was followed by a General Assembly of the APDIP during which a new Board of Directors was elected. Mrs Maria-Joao Mousinho was elected Chair of the APDIP.  Maria-Joao, an IT specialist and PID patient herself, is a very motivated and energetic person devoted to the PID cause.  IPOPI looks forward to see the Portuguese association grow into an efficient and successful organisation under her leadership. Other newly elected Board members include Ms Dulce Duarte, Vice Chair, Mr Nuno Urbano, Secretary, Mr Jose Israel Silva, Treasurer as well as Maria-Joao’s twin sister, Ana Cristina Das Neves Mousinho.

Amongst the immediate priorities of the APDIP will be the launch of a new website, the development of awareness toolkits and documentation, collaboration with stakeholder organisation such as Rarissimas and tackling the issue of chronic diseases status for PID in Portugal.

The meeting was sponsored by Baxter, CSL Behring and Octapharma.

World PI Week
IPOPI would be grateful for any support to the important work for primary immunodeficiencies.

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Executive Director: Johan Prevot
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