Fall/ Winter 2011

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!

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 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.

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.

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.

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”.

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 19^th 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.

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’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.

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.

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.

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.

The Regional Meeting took place in the Medical Union the 17^th 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.

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.