IPOPI - Autumn 2014

Autumn 2014

 
in this edition
 
From the Chairperson's desk
IPOPI News:
IPOPI’s Biennial Meeting is here! >
IPIC2015 – www.ipic2015.com >
First IPOPI Singapore PID Patients meeting >
One day in Bangkok >
Watch out Hong Kong – the PID League has arrived! >
IPOPI contributes to ensuring access to clinical trials data in Europe >
Back to the Future? by Sven Fandrup >
My experience on the IPOPI Board by Joy Rosario >
IPOPI joins Health First Europe >
Around the world:
International Plasma Awareness Week >
Full PID treatment for adults in Poland now a reality >
Two US Studies on the Importance of SCID NBS 1.1 >
Artistic performance on PIDs - EXPOSÉ >
DSAI Cartoons turned into a movie >
Summer fundraising event in France by IRIS >
ARPID Summer camp and political advocacy campaign >
Fourth PID Summer Camp in Serbia >
Joint Nordic Meeting in Iceland,May 2014 >
Awareness and advocacy activities in South Africa >
PID UK helps fight for a full clinical immunologist service in Scottish region >
NMO focus:
NMO Focus – APDIP, Portugal >
From the Chairperson's desk...
 
Dear Friends,

At the time of writing these lines, I am in Singapore where IPOPI is holding its First PID Patients Meeting! The meeting was organised with the precious help of the Singapore Paediatrics Society. I would like to take this opportunity to extend IPOPI’s sincere thanks to Dr Christian Harkensee and Dr Leiw Woei Kang who were pivotal in making the meeting happen. This event marks another step forward in IPOPI’s Bob LeBien programme which since its inception last year has helped to launch three new NMOs in South East Asia and soon four! Another exciting development in the region is the forming of a regional doctors society, a development that IPOPI has been encouraging and is supporting, more news about this soon!

IPOPI’s Biennial Meeting is here!
 
The XIIIth IPOPI Biennial Meeting taking place in Prague from the 29th of October to the 1st of November is just around the corner. IPOPI has been joining efforts to get to know more about our members dynamics, difficulties and activities to better prepare the lectures waiting for you in Czech Republic.

IPIC2015 – www.ipic2015.com
 
IPIC2015 is rapidly getting closer. To stay on top of the preparation work and congress news please visit www.ipic2015.com. The website is now online and can be accessed wherever you are from your mobile phone, tablet and PC.

First IPOPI Singapore PID Patients meeting
 
Patients, parents, physicians and IPOPI representatives at the meeting
Patients, parents, physicians and IPOPI representatives at the meeting
The first IPOPI Singapore PID National Patients meeting was held on September 13th as part of integral session of the 3rd Singapore Annual Paediatric and Prenatal annual congress in collaboration with the Singapore Paediatric Society. The IPOPI meeting brought together 70 participants including patients, family members and doctors from Singapore, Thailand, Malaysia and Vietnam and was an excellent opportunity to meet together with the patients and doctors to discuss the importance of starting a patient organisation in Singapore.

One day in Bangkok
 
Participants at the Meeting, including Johan Prevot, IPOPI’s Executive Director
Participants at the Meeting, including Johan Prevot, IPOPI’s Executive Director
In the last issue of e-News, we reported on the recent launch of ThaiPOPI, IPOPI’s National Member Organisation (NMO) in Thailand, joining the recently formed Malaysian group MyPOPI and most recently the PID League in Hong Kong, further helping to increase PID awareness in the region.

Watch out Hong Kong – the PID League has arrived!
 
Hong Kong is home to IPOPI’s newest national member organisation: the PID League! The PID League is IPOPI’s third South East Asian National Member Organisation (NMO), following the launches of the Malaysian group MyPOPI and ThaiPOPI.

IPOPI contributes to ensuring access to clinical trials data in Europe
 
IPOPI participated last June in a meeting organised by the European Medicines Agency (EMA) to discuss how to best ensure that clinical trials information is adequately available. The meeting was well attended by representatives of Member States, European Commission and EMA officials, as well as by patient organisations and industry representatives.

Back to the Future?
 
Sven Fandrup, IPOPI’s Board Member
My start as a member of the IPOPI board was rather dramatic. It happened during the IPOPI Biennial Meeting in Versailles. I was not elected, but coopted as there was an open slot in the Board after the outgoing chairman. Soon after my incorporation in the Board I was asked to take responsibility for planning the Biennials. As a former military officer I took upon this task rather naturally.

My experience on the IPOPI Board
 
Joy Rosario, IPOPI’s Board Member
Joy Rosario, IPOPI’s Board Member
In 1998, I attended my first IPOPI Biennial Meeting in Rhodes, Greece hosted by Dr Maria Kanariou who has dedicated her career to PID patients in Greece. This was thanks to an initiative of Louise Carroll, then Chair from New Zealand. It was an emotional experience as for the first time in 21 years I met other parents who had experienced the same struggle and sense of isolation my daughter and I had gone through all those years. Later I was invited by Dr Kanariou to speak in Athens which will remain a very special moment.

IPOPI joins Health First Europe
 
IPOPI is now a member of Health First Europe (HFE). As a follow-up from the participation in HFE’s General Assembly IPOPI requested membership to this alliance of patients, healthcare workers, academics and healthcare experts and the medical technology industry.

International Plasma Awareness Week
 
Celebrating donors and putting the spotlight on rare diseases

The second annual International Plasma Awareness Week (IPAW) will be celebrated October 12-18. A joint initiative of the Plasma Protein Therapeutics Association (PPTA) and its member companies, IPAW is designed to:

  • Raise global awareness about source plasma collection
  • Recognize the contributions of plasma donors in saving and improving lives
  • Increase understanding about lifesaving plasma protein therapies and rare diseases
Full PID treatment for adults in Poland now a reality
 
Success after one year of advocacy efforts

Our long fight for home treatment for adults finally has ended. Immunoprotect after long negotiations with the Ministry of Health received a written guarantee that adult patients with PIDs will have access to subcutaneous treatment at home on the same basis children have.

Two US Studies on the Importance of SCID NBS
 
The efforts to establish newborn screening for Severe Combined Immune Deficiency (SCID) in all 50 states in the U.S. has recently gained momentum. Within the past two months, two landmark studies have been printed in major medical journals that support the need for universal newborn screening for SCID, and these studies bolster the Immune Deficiency Foundation (IDF) SCID Newborn Screening Campaign, focused on ensuring that all babies, no matter where they are born in the U.S., have the chance at a healthy life.

Artistic performance on PIDs - EXPOSÉ
 
Igor Koruga, a 28 years old PID patient from Serbia recently put together a performance built around his life experience as a PID patient. The project EXPOSÉ, a mixture of contemporary dance and public speaking, premiered with great success in a local theater in Belgrade. EXPOSE was captured in video and the trailer can be viewed online here with English subtitles. IPOPI is happy to help further promote this artistic project and will include feature at the XIIIth IPOPI Biennial meeting in Prague during the lunch break of the 31st of October.

DSAI Cartoons turned into a movie
 
For dsai, German Patient Organisation for Primary Immunodeficiencies, a dream will soon be coming true as our cartoons will be turned into a movie. Our funny cartoons “Immun im Cartoon” describes the human immune system and shows, what bacteria, b-cells and t-cells do. The comics are currently used for raising awareness especially at schools and also at physicians medical practices and PID-centers.

Summer fundraising event in France by IRIS
 
Folklore festival of Confolens
Folklore festival of Confolens
IRIS comes back from a busy summer wanting to share with the other organisations a striking example of IRIS association’s members’ mobilisation at regional level. IRIS is committed in the regionalisation process and strongly believes in the achievements obtained locally for PID awareness.

ARPID Summer camp and political advocacy campaign
 
This past summer, from 29th of June to the 6th of July, ARPID organised the first summer camp for children with Primary Immunodeficiency at Raul Sadului, near Sibiu. We had 24 attendants between children and their parents.
Fourth PID Summer Camp in Serbia
 
The fourth Serbian PID Summer Camp took place in August in the beautiful Serbian mountain of Zlatar. This year, 12 families joined from different parts of our country to spend six exciting days with old friends. We were very lucky to have sunny days and warm weather to help enjoy the summer camp.  It was possible to walk around, picking flowers and eating local fruit such as wild strawberries, apples and pears.

Joint Nordic Meeting in Iceland, May 2014
 
Waterfall Gullfoss, Iceland
Waterfall Gullfoss, Iceland
The Icelandic patient organisation Lind invited patient representatives from the Nordic countries to a weekend filled with new experiences and a very interesting programme with lecturers from all Nordic countries.

Awareness and advocacy activities in South Africa
 
PiNSA’s Patient toolkit
PiNSA’s Patient toolkit
PiNSA has been very busy! In the last few months we reviewed our strategic plan 2014/2015 and appointed new committee members to take on different roles. Amongst recent activities were provincial meetings, two in Cape Town, one in Durban and a family day in Pretoria. Danielle Guignet is the person appointed to set up and manage the provincial groups and she has done a great job.

PID UK helps fight for a full clinical immunologist service in Scottish region
 
In May PID UK was alerted to the fact that adult patients in the Lothian (Edinburgh) area of Scotland are not getting the specialist service they need and are entitled to, to ensure best health outcomes. It is the only area in Scotland that does not have a Consultant Immunologist leading and co-ordinating PID patient care.

NMO Focus - APDIP, Portugal
 
PID awareness is key for quicker diagnosis and better access to care and the Portuguese PID Patient group main concern. APDIP (Associação Portuguesa de Doentes com Imunodeficiencias Primárias) is constituted solely of volunteers who endeavor to work with health officials, institutions, physicians, families and patients to improve the general conditions to Portuguese Patients.

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