IPOPI - Spring 2014

Spring 2014

 
in this edition
 
From the Chairperson's desk
IPOPI News:
IPOPI EU PID Forum on Cross-border healthcare and PIDs >
French Parliament PID Event >
IPOPI PID patients' workshop in Hong Kong, China >
IPOPI New Patient Information Leaflets >
IPOPI Position Statement on National Rare Diseases Plans >
Parliamentary Question on National Rare Diseases Plans >
Parliamentary Question to the European Commission on Cross-border healthcare in the EU >
IPOPI Patient Information Leaflets translated into Polish >
Health Policy Update >
Leire Solis joins IPOPI staff >
WPIW 2014 countdown >
Egypt and Malaysia are IPOPI's newest members! >
IPOPI attends International Plasma Protein Congress >
IPOPI organises an Eastern European Regional Meeting in Antalya, Turkey >
IPOPI's XIIIth Biennial Meeting - Prague >
Around the world:
SubCut IG home therapy now available for adults in Poland >
Rare Diseases Day in Argentina >
1st Meeting of German PID Adult Centers >
HAJAR association... going stronger! >
IRIS invited to the French National Society of Internal Medicine congress >
Awareness campaigns in Austria >
PID UK responds to inquiry on safety of blood products in the UK >
IPSPI advocacy campaign in India >
IDF Announces Two Major Initiatives >
AEDIP developments in Spain >
Irish MP enquires MoH about PID patients' medical cards >
Roberta Pena awarded for her NGO work >
From the Chairperson's desk...
 
Dear Friends,

Last year was a historical year for IPOPI. Our very first successful scientific congress (IPIC) which focused on clinical developments in the PID field, the launch of our Bob LeBien Asian development plan, regional patients meetings in Latin America and Africa, awareness campaign workshops in Eastern Europe and Latin America, the expansion of IPOPI staff and the most successful year to date in terms of fundraising made 2013 a very special year.

IPOPI EU PID Forum on Cross-border healthcare and PIDs
 
IPOPI held its 4th PID Forum on the "Cross-border healthcare and PIDs" on 29 January 2014 at the European Parliament in Brussels (Belgium). This Forum edition, hosted by the Member of the European Parliament Emer Costello (S&D, Ireland), looked into the potential benefits the Directive 24/2011/EU could bring to patients with PIDs.

French Parliament PID Event
 
On the 3rd of December 2013, IRIS (French NMO), IPOPI and CEREDIH (Reference centre for PIDs) organised a meeting at the French Parliament chaired by Patricia Schillinger and Dominique Orliac, Members of French Parliament (MP)which looked at the topic 'Improve access to diagnosis and treatment for PID Patients'.

IPOPI PID patients' workshop in Hong Kong, China
 
The first PID National Patients meeting was held on Saturday 7 December 2013, at the Hong Kong Academy of Medicine with the support of the Department of Paediatrics & Adolescent Medicine, LKS Faculty of Medicine of the University of Hong Kong.

IPOPI New Patient Information Leaflets
 
IPOPI has published a new series of information leaflets comprising helpful information and guidance for patients, their families and other interested stakeholders of the Primary Immunodeficiencies (PID).

IPOPI Position Statement on National Rare Diseases Plans
 
IPOPI released a position statement outlining the need for EU member states to take action with regards to the implementation of national rare diseases plans as foreseen in the Council Recommendation 2009/C 151/02 on an action in the field of rare diseases from 8 June 2009.

Parliamentary Question on National Rare Diseases Plans
 
In line with the recommendations outlined at IPOPI's PID Forum last year on the implementation status of national rare diseases plans and IPOPI's recent position statement, MEP Nessa Childers who had chaired the forum recently tabled a Parliamentary Question (PQ) on this topic.

Parliamentary Question to the European Commission on Cross-border healthcare in the EU
 
As a follow-up of the 4th IPOPI PID Forum on Cross-border healthcare and PIDs, Members of the European Parliament Emer Costello (S&D, Ireland), Mairead McGuinness (EPP, Ireland) and Pat the Cope Gallagher (ALDE, Ireland) tabled a Parliamentary Question to the European Commission

IPOPI Patient Information Leaflets translated into Polish
 
Immunoprotect, IPOPI's Polish NMO, translated into Polish five IPOPI Patient Information Leaflets. The leaflets 'Treatments for primary immunodeficiencies: a guide for patients and their families', 'Stay healthy!' and 'Guide for Schools' released in 2011

Health Policy Update
 
European Union and Rare Diseases - Health research funding programme to support rare diseases networks, databases and registries.

The European Union's funding programme for health has been adopted by the European Parliament on 26 February 2014. The European Health for Growth Programme 2014-2020 has, amongst other priorities, to support actions in the field of rare diseases, especially with regards to networks, databases and registries.

Leire Solis joins IPOPI staff
 
Leire Solis has recently joined IPOPI's staff as Health Policy and Advocacy Manager. Leire previously worked as a senior consultant at a Public Policy consultancy agency in Brussels and had already collaborated in the past on several health policy projects with IPOPI, including IPOPI's PID Forums at the European Parliament and IPOPI Awareness Campaign Workshops. She speaks several languages including Spanish (mother tongue), French and English (Fluent) and German (intermediate).

WPIW 2014 countdown
 
The third edition of World Primary Immunodefiencies Week (WPIW) is just around the corner! From April 22nd to the 29th join us in a unique global momentum to raise awareness about Primary Immunodeficiencies (PIDs).

Egypt and Malaysia are IPOPI's newest members!
 
IPOPI is glad to report that two new PID patient support groups have joined our membership. Nada from Egypt is our fourth African NMO, joining Morocco, South Africa and Uganda and further helping spread PID awareness in the African continent.

IPOPI attends International Plasma Protein Congress
 
An IPOPI delegation made up of Johan Prévot, Jose Drabwell and the IPOPI Board of Directors attended the 2014 International Plasma Protein Congress. This year marked the 20th edition of the congress which was held in the beautiful city of Vienna on 11 and 12 March 2014.

IPOPI organises an Eastern European Regional Meeting in Antalya, Turkey
 
POPI organised on Saturday 15 March 2014 an Eastern European Regional Meeting in Antalya (Turkey). Representatives from 10 National Member Organisations gathered with physicians, industry representatives and IPOPI staff and looked into the adaptation of the Antalya expert declaration to country-specific situations.

IPOPI's XIIIth Biennial Meeting - Prague
 
IPOPI will be organising its XIIIth Biennial Meeting from October 29 to November 1st in collaboration with ESID and INGID in Prague, Czech Republic, and we hope to count on as many National Member Organisations (NMOs) as possible.

SubCut IG home therapy now available for adults in Poland
 
Immunoprotect's (IPOPI Polish Member) many advocacy efforts finally paid off with equal access to Intravenous Immunoglobulin (IVIG) hospital therapy and Subcutaneous Immunoglobulin (SCIG) home therapy for both adults and children with primary immunodeficiencies being guaranteed by the local health authorities.

Rare Diseases Day in Argentina
 
To mark the World Rare Diseases Day celebrated on Friday 28th February, the Argentine Association for Primary Immunodeficiencies (AAPIDP) joined the Argentine Federation of Rare Diseases, (FADEPOF) and others nationals rare diseases associations at the Air Force Square in Buenos Aires, Argentina, in the event "People are ahead of the disease, discover us".

1st Meeting of German PID Adult Centers
 
On November 22 the head of the Germany's PID centers for adult patients met in the dsai headquarters.

This was the first meeting of the kind in Germany and it aimed at identifying specialists for certain types of PIDs across the country. Each center had the opportunity to provide an overview of its work, particular infrastructure, patients, therapies and research.

HAJAR association... going stronger!
 
HAJAR, the Moroccan association for the support of children with PIDs is involved in several education and awareness projects.

Transplantation center in Morocco: Three years after the first bone marrow transplant (BMT) in Morocco, a third transplantation has been performed n Saad, a SCID patient. The Transplantation center in Marrakech will hopefully manage other patients in the future.

IRIS invited to the French National Society of Internal Medicine congress
 
IRIS was kindly invited by the French National Society of Internal Medicine (SNFMI) to attend its congress in last December in the city of Saint Malo. SNFMI devoted the healthcare workers' training to: "PIDs: understanding, diagnosis, treatments, use of the Immunoglobulin."

Awareness campaigns in Austria
 
OSPID (Österreichische Selbsthilfegruppe primärer Immum Defekte) has been increasingly active in their awareness activities. During the last Plasma Awareness Week, OSPID held an Information Day in all Plasma Centers, spoke with donors, pharmaceutical industry and politicians and compiled a short video to be put on display in plasma centers.

PID UK responds to inquiry on safety of blood products in the UK
 
PID UK has submitted evidence to the House of Commons Science and Technology Committee's inquiry into blood safety. The inquiry, still on going, aims to gather evidence into the current state of UK blood supply and what risks were foreseen in the near future.

IPSPI advocacy campaign in India
 
IPSPI (Indian Patients Society for Primary Immunodeficiency) has been successfully duplicating its local advocacy efforts. We met with the Centre Deputy Commissioner (NCD) and had the opportunity to personally hand him several relevant documents. IPSPI receive a support letter for IPOPI

IDF Announces Two Major Initiatives
 
The Immune Deficiency Foundation (IDF) announces two major initiatives - the development of PI CONNECT and the redesign of IDF Friends.

IDF Will Develop PI CONNECT - A team led by IDF has been approved for a funding award by the Patient-Centered Outcomes Research Institute (PCORI) to develop PI CONNECT, which will part of the a larger health data network in the U.S.

AEDIP developments in Spain
 
AEDIP (Spanish PID patient association) has been developing several political awareness activities, most especially since the 2012 IPOPI Awareness Workshop held in Barcelona. Recently AEDIP sent a proposition of a protocol to the Ministry of Health suggesting that PID patients' treatment should be made available in all hospitals and not only in the Hospital of their area of residence.

Irish MP enquires MoH about PID patients' medical cards
 
Irish Member of Parliament, Billy Kelleher (Cork North Central, Fianna Fail), asked the Minister of Health (MoH) about the situation of the medical cards awarded to PID patients in the past 5 years. Kelleher also enquired about the number of patients benefiting from the card.

Roberta Pena awarded for her NGO work
 
IPOPI board member and AAPIDP President, Roberta Pena, was honoured by the Senate of Argentina for her good work with the local PID patients' group.
The award ceremony was a celebration of Women's Day recognising remarkable women who have made a difference by helping others in complex areas where public organisms sometimes cannot.

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