For those of you in the northern hemisphere we hope you have had an enjoyable summer break. I know many of our NMOs were very active during the summer and we have been pleased to support and participate in some of their projects such as the awareness workshop in July in Belgium and the organisation of the PID Nordic Meeting which was held on 9-11 September and of which there will be a report in the next issue of E-News.
In this summer issue of e-news you will find the latest information on our recent activities and will realize that we have also been very busy at IPOPI in recent months.
1st IPOPI PID FORUM on SCID Newborn Screening
On Wednesday 15 June 2011, Mrs. Willmott MEP (S&D, United Kingdom) hosted the first Primary Immunodeficiency Forum organised by the International Patient Organisation for Primary Immunodefiencies (IPOPI) at the European Parliament in Brussels, Belgium. The meeting focused on newborn screening for Severe Combined Immunodeficiency (SCID), a life-threatening rare disorder causing the body's immune system not to function properly. A group of experts representing patients, academics, physicians, industry and policy makers discussed the issues facing SCID patients and their families and agreed upon a set of key-recommendations to help the European Institutions and Member States in understanding the best way forward.
This report presents the concrete recommendations for policy action and summarises the key points that were addressed by the Forum.
IPOPI Patient Awareness Workshop, Belgium, 2 July 2011
As part of its PID patient awareness programme, IPOPI organised the first patient awareness NMO pilot workshop in Belgium with the Belgian Organisation for Patients with Primary Immunodeficiencies (BOPPI).
The workshop enabled all participants to share their knowledge about PID, give feedback on the IPOPI patient awareness toolkit and plan concrete awareness raising activities in Belgium.
The workshop programme featured presentations outlining the perspectives and current priorities of BOPPI, the contents and objectives of IPOPI's patient awareness toolkit, an overview of the Belgian national plan for rare diseases and the PID environment in Belgium as well as concrete examples of awareness campaigns and advocacy events.
IPOPI participates in EPPOSI's Stakeholders Day
IPOPI staff attended the EPPOSI Stakeholders Day held in Brussels on 19 May 2011.
The event's morning programme featured plenary sessions focusing on EPPOSI's advance innovation programmes on Chronic Conditions Management and Health Technology assessments (HTAs).
In the afternoon, IPOPI attended the break-out session focusing on HTAs and whose purpose was to fine-tune the EPPOSI research initiative's themes and priorities on HTAs.
IPOPI to launch new tool to assist NMOs in building or redesigning their own websites
IPOPI is pleased to inform its National Member Organisations (NMOs) that a new NMO website creation and management toolkit will soon be launched on the IPOPI website. This new tool will enable those NMOs which do not yet have a website to create and launch one easily without having to spend significant resources. Various frameworks and designs will be available, the idea being that NMOs will have the flexibility to build their website as they wish and according to their needs and objectives.
IPOPI participates in Alpha Europe Meeting, Amsterdam
IPOPI was pleased to be invited by the Alpha Europe Foundation to attend their Annual General Meeting and Workshop held in Amsterdam on 6-7 May 2011. Johan Prevot provided a presentation on Developing a sustainable international patient organization: The experience of the International Patient Organisation for Primary Immunodeficiencies. The PLUS Dublin consensus statement was discussed at the meeting and subsequently endorsed by Alpha Europe.
PLUS Consensus Statement 2011
As a direct outcome of the PLUS consensus meeting held in January 2011 in Dublin (for more details about this meeting see the spring issue of E-News here), the PLUS Consensus Statement 2011 on "Vital issues relating to the collection and provision of blood components and plasma-derived medicinal products", was recently published in Vox Sanguinis. To download the statement click here.
PLUS MEP Meetings, Brussels, June 2011
Larry Warren and Johan Prévot attended a series of meetings in Brussels with Members of the European Parliament (MEPs) on behalf of PLUS Executive Committee, in June 2011. These included meetings with Diogo Feio (EPP, Portugal), Jiri Mastalka (GUE/NGL, Czech Republic), Philippe Juvin (EPP,France), Elzbieta Lukacijewska (EPP, Poland), Phil Prendergast (S&D, Ireland), and Theodoros Skylakakis (EPP, Greece). Several topics were discussed.
IPOPI attends IPFA/PEI 18th International Workshop
IPOPI staff attended the 18th International Workshop organised by the International Plasma Fractionation Association (IPFA) in collaboration with the Paul Ehrlich Institute (PEI) on "Surveillance and Screening of Blood Borne Pathogens" held in Dublin on 24-25 May 2011. The scientific programme of the workshop comprised various interesting sessions including among others a session on "Emerging Pathogens" on Day 1 of the congress with presentations on the molecular evolution of viruses' impact on human activity, the World Health Organisation (WHO)'s view on emerging pathogens as well as a presentation on endogenous retroviruses.
ISBT Standing Committee on Ethics Meeting, Lisbon, 19 June 2011
Participating on behalf of PLUS Executive Committee, Johan Prévot, was invited to attend the International Society of Blood Transfusion (ISBT)'s Standing Committee meeting in Lisbon, Portugal on 19 June 2011.
Immune Deficiency Foundation Celebrates 30 Years at the IDF 2011 National Conference
Over a thousand people from 10 countries, 40 states and Washington DC gathered in Phoenix, Arizona to participate in the IDF 2011 National Conference for patients and families. Jose Drabwell admirably represented IPOPI at the meeting and Roberta Pena, an IPOPI Board member traveled all the way from Argentina to participate in the conference. Attendees were there to learn more about primary immunodeficiency diseases, meet others who live with these diseases and this year, celebrate the 30th Anniversary of IDF.
Isaac Antilla receives Luciano Vassalli Award
Mrs Drabwell, IPOPI's chair, presented Isaac Antilla with the Luciano Vassalli award during the Immune Deficiency Foundation (IDF) conference in Phoenix Arizona held in June 2011. The Luciano Vassalli award has been established in memory of Luciano Vassalli, who had such a great impact on the primary immunodeficiency world in his short life. It recognizes a young person who has made a difference to the world of primary immunodeficiency for such acts as, for example, supporting a sibling, parent, people with a primary immunodeficiency or for making an impact on the PID world.
EURORDIS MEMBERSHIP MEETING 2011
On behalf of IPOPI and Rare Disorders Denmark I took part in the EURORDIS Membership Meeting held in Amsterdam on 13 - 14 May. Apart from the Annual General Assembly, which took place on Friday morning, the whole meeting was dedicated to exchanging ideas and experiences concerning EUROPLAN.
In a ministerial council of Healthministers the "Council Recommendation on a European Action in the Field of Rare Disorders" was adopted on June 9, 2009. Through this document Member States have committed to adopt Rare Disorders action plans at national levels before December 2013.
PID Events in Norway
Sharing fun and knowledge on family weekend in Norway
by Morten Rolseth
This august the Norwegian Immunodeficiency Association (NIA) hosted a family weekend for Children with PID, siblings and their parents. The purpose of the meeting was to share professional medical information and personal experiences. The focus was on meeting equals/peers, discussing the transition from children to adult department, sharing information and networking while having fun.
Jeffrey Modell Diagnostic and Research Center for Primary Immunodeficiencies in Argentina
Three different events were held from August 21 to 23 in Buenos Aires, Argentina as a result of the inauguration of the JMF Center in the Ricardo Gutierrez Children's Hospital.
On Sunday 21 August at 11.30 we enjoyed a play at the Paseo La Plaza, Pablo Neruda Auditorium titled "El Maravilloso Mundo del Señor SI" "The Marvelous World of Mister SI"
A group of local actors represented under a Circus format, the way in which the immune system works. A live band accompanied the play at all times.
The atmosphere was really perfect as this play was also a good opportunity for doctors and their families, as well as patients and their families to gather and become integrated celebrating KID'S DAY as a big PID FAMILY.
Primary Immunodeficiency Network of South Africa (PiNSA) - Report on Rock and Roll Party Fundraiser
This fundraiser was held at the Pretoria Country Club and was a great success - it was an evening of dance, fun and an opportunity to highlight PID. We had over 50 people attend and everyone dressed up in the style of the 1950's. The table settings were old LP records, takkies and balloons as a centre piece (the takkies were filled with tips at the end and a pair given to each waiter/waitress). PiNSA blue overlays completed the theme and the menu was popcorn, gourmet burgers and deluxe milkshakes.
2nd LASID IPOPI Meeting, Mexico City, Mexico
IPOPI is pleased to announce the upcoming 2nd Meeting of the Latin America Society for Immunodeficiencies (LASID) and IPOPI in Mexico City from 13-15 October 2011.
Jeffrey Modell Foundation Advocacy Toolkit
The Jeffrey Modell Foundation recently issued an advocacy toolkit comprising of a set of Governments and Healthcare Authorities Outreach Guidelines.
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