Fall/ Winter 2011
in this edition
From the chairperson's desk
EU Parliament PID Forum HTAs >
Global Leaders Meeting >
Meeting with John Dalli >
European Medicine Agency brief >
2nd LASID-IPOPI Meeting - Mexico report >
LATAM Summit - Mexico report >
Call for SCID Newborn Screening in the UK >
EPPOSI developments >
IPOPI's new book on HTAs and RD Therapies >
Around the world:
Russian Workshop >
PID awareness Day Netherlands >
Serbia PID summer camp >
BOPPI bicycle event >
Uruguay Meeting >
First European Jeffrey Modell Centre Network Meeting >
APDIP General Meeting in Portugal >
Family day AAPIDP - Argentina >
From the Chairperson's desk...
Dear Friends, dear Colleagues,

First of all I would like to seize the opportunity to wish you a Merry Christmas and a happy and especially healthy new year!

There have been many new and positive developments on the IPOPI front since the eNews Summer issue and I know that many of our NMOs were also involved in great awareness and advocacy campaigns, as you will read in this edition of IPOPI's newsletter.

IPOPI holds 2nd PID Forum at EU Parliament
On December 6, 2011, IPOPI held its second PID Forum at the European Parliament on Health Technology Assessments (HTAs) and Primary Immunodeficiencies.

The event was very successful and was hosted by Member of the European Parliament (MEP) Glenis Willmott (UK, PES). It was attended by numerous stakeholders including patient, physician and academia representatives, industry experts, as well as by 9 MEPs from different political parties.

IPOPI Global Leaders Meeting 2011
IPOPI held its second landmark Global Leaders Meeting (GLM) in London on 4-5 November 2011. The theme of this year's meeting was "Improved Access to Treatment for Patients with Primary Immunodeficiencies". The meeting was attended by a range of key stakeholders including patient representatives, physicians, nurses, regulators, industry and other specialists.

Meeting with EU Health Commissioner John Dalli
Johan Prevot along with Brian O'Mahony (President, EHC) met on behalf of the Executive Committee of the Platform of Plasma Protein Users (PLUS) with EU Health Commissioner John Dalli on October 13, 2011 in Brussels.

European Medicine Agency updates
During October the European Medicine Agency convened the "Third stakeholders forum on the implementation of the new Pharmacovigilance legislation", attended by Health Care Professionals, Patient Organisations, EMA committee members, Member States Representatives and Industry.

Planning and prioritising of this implementation has been effected by budgetary restraints, but a new committee The Pharmacovigilance and Risk Assessment Committee (PRAC) will begin work in July 2012.

Report of the 2nd meeting of LASID and IPOPI, Mexico City, 14 October 2011
On October 14th while the LASID Congress was taking place in the Fiesta American Reforma Hotel, México City, IPOPI held its second Latin America Patient Organizations Meeting. The meeting was attended by the representatives of 9 Latin American countries, including the following IPOPI National Member Organisations: Argentina, Brazil, Chile, México, Colombia and Venezuela as well as patient organizations in formation Uruguay, Peru, and Panamá.

Report of the LATAM America High Level Summit, Mexico City, 12 October 2011
On October 12th 2011 at the Four Season Hotel, Mexico City Lasid, JMF and IPOPI held the Latin America High Level Summit on Primary Immunodeficiencies "Call to Action".

The summit was attended by 50 participants amongst them physicians, patients, government officials and pharmaceutical companies' representatives.

Call for SCID Newborn Screening in the UK
As part of its partnership with Member of the European Parliament (MEP) Glenis Willmott, IPOPI participated in a small but important meeting in Nottingham United Kingdom on Saturday 19th November, on the need for implementation of SCID newborn screening. The meeting followed on IPOPI's campaign to introduce SCID newborn Screening in the European Union.

EPPOSI Developments
The European Platform for Patients' Organizations, Science and Industry (EPPOSI) of which IPOPI is a member organisation held several events of interest in recent months, including notably on "A Societal Benefits Approach to HTA: What do we mean in terms of definition and scope?" "seeking to better understand what stakeholders consider such an approach to be but also critique the initial preparatory work of Epposi so far and provide inputs into a forward looking scope.

IPOPI co-edits new book on HTAs and RD Therapies
IPOPI's recently released a co-edited issue of Pharmaceuticals Policy and Law in collaboration with Professor Jose-Luis Valverde (University of Granada, Spain) looking at Health Technology Assessments (HTAs) and Rare Diseases Therapies.

First Russian National PID Patient Meeting
As an IPOPI Board representative I was pleased to participate in the First national meeting of Russian patients suffering from Primary Immunodeficiencies. This meeting took place in Moscow on November 17th and brought together representatives from over 20 regions in Russia, over 60 participants in total (patients, parents of the PID children and doctors). This inter-regional Meeting was organized with the support of IPOPI, by the recently formed Russian National Organization of Patient's with PID in collaboration with a local partner organization, the Sunflower Foundation.

PID awareness campaign in the Netherlands
With the help of immunologist Dr. Esther de Vries and the plasma-industry we have started up an awareness campaign on PID. The Dutch translation for this is "ALTIJDZIEK.NL" the direct translation would mean "always sick". This name was specifically chosen for the campaign because most parents with PID children visit their local GP (doctor) regularly with the same complaint "my child is always sick" and most people can relate to this statement.

First Summer camp in Serbia!
SPwPID ("Supporting Persons with Primary Immunodeficiency"), IPOPI's NMO in Serbia, organized a summer camp in August, in a small Serbian spa, Soko Banja- the best local outdoor spa center. The name of the camp was "We are children, we are not diagnosis" (inspired by JMF brochures). Participants were children and young adults with PID and their parents.

PID Awareness Bicycle Event in Belgium
It is a cold morning on Sunday 16th October but the sun is shining bright - an unlikely event in Belgium at this time of the year. We are meeting in Lanquesaint (Ath, Belgium) where BOPPI's head office is located for the first ever Belgian PID Patient-Doctor awareness event.

Montevideo, Uruguay - Regional Meeting with Patients and Physicians
The Regional Meeting took place in the Medical Union the 17th of September2011 in Montevideo, Uruguay.

Representatives of the Argentine Association of Pids Roberta Anido de Pena and Gustavo Pena with Dr. Matías Oleastro medical advisor organized this meeting intended to formalize a National Patient Organization in Uruguay.

First European Jeffrey Modell Centre Network Meeting: Advancing the Care for Immunodeficiency Patients
The first European Jeffrey Modell Centre (JMF) network meeting was held in Zurich, Switzerland on 24-25 November 2011. The meeting features several sessions including How to Implement Extended Newborn Screening into National Screening Programmes; Newborn Screening Technical Aspects and Beyond; Collaboration; Decreasing time to diagnosis and Newborn screening on the Governmental Agenda - how do we obtain EU support?

APDIP General Meeting, Portugal
The Associaçao Portuguesa de Doentes com Immunodeficiencias Primarias (APDIP) held its general annual meeting in Odivelas (Greater Lisbon), Portugal, on Saturday 19 November 2011. Johan Prevot who attended the meeting on behalf of IPOPI provided a presentation on EU Health Policy Developments and outlined the most recent achievements of IPOPI and upcoming dossiers of interest, including on Health Technology Assessments and SCID newborn screening.

AAPIDP Family Day 2011
On Saturday 22 October 2011, 11.00-17.00hrs, at the Military Circle Sub-site Olivos in Vicente López, the "Family Day of the Association" was held in order to share a family day and integrate a little more each other.

The event was attended by 87 people. We shared a lunch, and the kids enjoyed the art corner organized by two adult patients and a mother, where they ended up producing? very nice masks.

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