Impressions Of Den Bosch

Gustavo Pena, Argentina

This is the second time I assist in representation of my association to this kind of Conference so it has been a real a privilege from all points of view because it gives me the possibility to see the enormous effort made by ESID, INGID and IPOPI working together.

The organization of the event was excellent. The elected city S´Hertogenbosch was really amazing, and the places were the social events took place were fabulous, like Saint John’s Cathedral.

My participation in this meeting was of great importance since it not only helped to develop relationships with other associations but also gave me the possibility to become aware of the scientific progress made so far, which brings a lot of hope for the future.

The participation of so many different countries like Russia, India, Serbia, EEUU, Spain, Canada, Germany, France, Argentina, Brazil, Italy, New Zealand, Morocco, United Kingdom, Cyprus, Australia, Switzerland, The Netherlands, Sweden, Denmark and South Africa was really impressive.

The IPOPI session opened with a welcoming message from Mrs Bianca Pizzera the retiring chair of IPOPI who has done an extraordinary job.

The most striking point discussed during the conference was the difficult situation that India has to live through. The cost of therapy increased a lot, so much so that most families can’t afford it. Mrs Rubby Chawla from (IPSPI India) made a clear presentation about their problems.

Regarding the presentations of the different countries the most attractive ones for me were the IDF (USA), JMF (USA) and DSAI (Germany).

The American association’s presentation was particularly interesting. Their approach and focus on statistics shows a very practical way of dealing with the different needs and projects they develop. By being aware of the real needs of the patient population they can act quickly and obtain good results. They are a very interesting model to imitate.

The German association who presented their new headquarters is an example of an excellent organization and order.

The highlights from the ESID conference presented from Dr. Teresa Espanol and the IPOPI MAP were of great importance because they explain in a clear way what are the scientific news going around the world.

Another interesting subject was the entire job INGID is doing for primary immunodeficiencies. For Latin-American countries they are an example to follow. It would be a pleasure if INGID started working more closely with IPOPI.

Something that I still think has to be developed even further is “Young Adults” they are and will be the future, that’s why they should be more involved in IPOPI issues. NMO’s should interest young adults in the worldwide international patient organization and get them involved in the work of IPOPI.

Another good idea was presented from Gabriele Rosario from South Africa who developed “MY POSSIBLE” an excellent Awareness Raising Campaign, which young adults could carry out in their own national association.

IPOPI’s new goals from now on are the “TWINNING Proposal” and the “NMO SUPPORT PROGRAMME” which clearly stresses IPOPI’s international approach for emerging NMO’s.

So, all in all the balance of the conference was very positive and I hope to see ESID; INGID an IPOPI still working closely to improve quality of life, diagnosis, treatment and care for people with primary immunodeficiencies.

Stefan Nordeman

In this article, Stefan Nordeman, representing PIO, the Swedish patient organization for primary immunodeficiencies, describes his experiences from the IPOPI meeting in ´s-Hertogenbosch 2008.

What an experience! I had the privilege of participating at IPOPI’s biannual international meeting, organized in cooperation with ESID and INGID. This time around, the meeting took place in ´s-Hertogenbosch, Netherlands. Those of us who work for PIO on a regional level, probably do not quite understand how much work is done by PIO on a national as well as international level. This especially applies to those of us who have joined PIO in the last couple of years and did not take part in the journey from being the first and only organization in the world for patients with primary immunodeficiencies to being a part of an international organization. To participate in and learn about the international cooperation makes it even more obvious what enormous work is carried out by PIO’s board and the respect that PIO as an organization possesses internationally and how important the cooperation between the Nordic countries is. The journey began at Arlanda airport, where those of us who were flying to the Netherlands met on a Wednesday morning in October. The group consisted of Anneli Larsson (President of PIO), Ann-Sofie Isaksson Nordmark (Vice President of PIO), Maria Löfving (Treasurer in PIO), Maria Monfors (President of the regional organization PIO Stockholm) and me, Stefan Nordeman (President of the regional organization PIO Örnsköldsvik).

At lunchtime, we landed at Schiphol airport and took the train to Amsterdam were we spent some time strolling around the area near the station. After another one and a half hour’s train ride, we reached ´s-Hertogenbosch and it was nice to be able to relax for a while and sleep in a comfortable bed. Thursday began with registration and it was then that I started to understand how big this meeting was. Even if you try to imagine in advance what it will be like, it is not like you think it will be. You are impressed by the knowledge and the great interest in primary immunodeficiencies around the world.

In the afternoon, India and Germany gave presentations on their organizations, and when you compare to the Swedish way of working you realize how large the differences are between the member organizations of IPOPI. Our working conditions are very different and the social welfare systems, cultural differences and the economic prerequisites in the various countries are so different that it is impressive to see that it is possible to make an international organization work. But I suppose that it is more important to see the similarities and to focus on those instead of seeing the differences and difficulties. Thursday ended with a welcome reception at a museum dedicated to Jheronimus Bosch, the town’s great artist. The remaining days continued at a high pace; beginning early and finishing late. You receive so much information and so there are so many impressions to absorb that you do not feel quite sufficient when you are unaccustomed to these big meetings. The extent of the knowledge all over our world, the amazing people that are working to spread knowledge about primary immunodeficiencies encourages you to keep on working for PIO’s cause in Sweden - even if it at times feels hard and like it is not going anywhere. One occasion during the meeting that I remember well was the presenting of an award to a young person who has made a difference for primary immunodeficiencies and his fellow beings in some way. The parents of a young boy from Switzerland, who tragically passed away, have established this award that they personally presented along with some personal belongings from the boy. The award was presented to a young man from Norway who himself is severely affected by his immunodeficiency and despite of this he struggles on to help his fellow beings and to keep his spirits up. To give away your dead son’s personal belongings together with an award is impressive and you are moved by the gravity of the moment. The memory of their son will live on in the awards that they present and will be an incentive for us all to continue struggling, even if there is no light to be seen at the end of the tunnel. Even in death you can convey the message of joy, be an inspiration to others and give the energy to continue working.