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De EGA is een pan-Europese umbrella groep die de belangen vertegenwoordigt van Gaucherpatienten en Gaucherpatientgroepen in Europa en elders in de wereld. Lokale patientgroepen kunnen in afzondering niet effectief werken. De EGA bied een goede vertegenwooNederlands ▼ login ▼
Dear friends, IGA members and everyone else involved in the Gaucher community... it is with great sadness and a heavy heart that I write this message to you all.
Due to serious health issues I have taken the very difficult and yet easy decision to step down/resign from the IGA board and all IGA work. I have informed the IGA board and staff team about this by email on the 25th of August. I know in my heart that this is the right thing for me to do and the fair thing to do to the IGA.
Just about 17 years ago I had breast cancer and even though I was told that I had recovered from this, it has now come back as metastases and has spread to my lungs, stomach, lymph nodes and possibly bones. There is no cure but hopefully the treatment they have offered me will stop the cancer from spreading more. I have been in hospital for the first 3½ weeks of August because I couldn’t breath and x-ray showed that my lung was full of fluid. That has now been removed, but the x-ray also showed suspicious “spots” that have now been diagnosed as breast cancer metastases.
I know you will all understand I now have to focus on my health and my family. Together with the IGA board and staff I am taking the steps for the formal resignation and you will be informed by the IGA about the official date.
For the time being I will continue as chair for the Danish Gaucher association, although it will be at a minimum of activity. I will also stay as Danish IGA representative.
The IGA has been a very big part of my life for something like 20 years, leaving is so so so very difficult – but I have the full confidence in the IGA and all its members. The IGA is a strong organization and indeed unique. I am going to miss it all. I am honoured and proud that I could be a part of the IGA. It has such been an honour to work with all of you fantastic and very special people in the field of Gaucher – both the patients, the national organizations, the IGA and all who have a professional link - are most certainly very special and precious.
To me the IGA is something personal: you are all my personal friends even though we live far from each other, we have shared so many things both related to the work we have been doing for Gaucher families around the world but especially on the personal level we have shared our ups and downs, spending time talking face to face or online. Love you all – and remember when the IGA host the next face to face members meeting: "we need to dance!"
Take care everyone,