eni Meeting 2012



EURopean Organisation for Rare DISeases
May 22nd – May 25th 2012

Between May 21st and 27th Barbara and I stayed in Brussels for the EURORDIS General Assembly, the European Congress for Rare diseases and orphan products and, last but not least, the third General Assembly of the European Network for Ichthyosis e.V..

Wednesday morning 9 o’clock, the General Assembly of EUORDIS started and after the activity report and the financial report (which can be looked at on the EURORDIS website) the Board of Directors was approved and the election of 5 new board members took place. I was very lucky to be one of the elected 5. Since I am in place of a board member who dropped out, my term of office is only one year. This gives me the possibility to have a look at the amount of work and time necessary to fulfil my own pretences and then to decide whether to apply for a seat again or not.

Afterwards we took part in a workshop “Centres of Expertise and Reference Networks” where the requirements for these institutions were presented in order to prepare for the sessions of the ECRD.

For the Ichthyosis the establishment of CoE’s is not primary, since their existence is the condition for the development of European Reference Networks (ERN), the constitution of CoE’s becomes a very important topic.
Europlan, the commission proposing the standards for the National Plans for Rare Diseases of the Member States, predetermines for a CoE an interdisciplinary approach because they start from the premise that EACH rare disease is multi-organic and therefore many different specialists would have to be in every CoE.

The ERN is supposed to be the institution where all information, data, experiences concerning treatment and care, different ways of diagnosis and therapies are being collected, deposited and may be called for by any CoE or clinician.

For Germany it could look like that:
CoE’s in Freiburg, Tübingen, Ulm, Kiel and Salzburg and the ERN might be in Münster where all the NIRK data is already deposited. This will unfortunately not finance the NIRK, but might help to keep the coordinator of the network for a longer time.
Thursday and Friday we went to the ECRD.
Besides the CoE and ERN there were 5 more sessions.
One very important corner mark for the Ichthyosis is the implementation of the commission’s recommendation on cross-border-healthcare. This would enable patients to obtain diagnosis and therapy in European countries and now they discuss about the obligation for the national health care system to take on the arising costs.
Although data bases are a wonderful and interesting topic, we could not go there, it overlapped with “translation from childhood to adulthood”. The problem that many patients have a perfect health care system with all stakeholders working together wonderfully as long as they are children; this stops at


eni Meeting

Saturday morning at 9 o’clock we started the 3 rd General Assembly of the EUROPEAN NETWORK FOR ICHTHYOSIS.
By now we are thirteen countries:
Belgium, Switzerland, Denmark, Germany, Spain, France, Italy, Norway, Poland, Portugal, Sweden, Finland and the UK Great Britain. 

Furthermore there are three associated members: 
Ireland (which belongs to the UK), AAIM, a foundation from Monaco and a mother from the Netherlands (there’s no association in the Netherlands at the moment).
Unfortunately not all association could take part. Belgium, Switzerland, Norway, Poland and Portugal couldn’t send a representative. The mother from the Netherlands, Tessa Jabaaij made it possible to come.

The Board of Directors and the treasurer were approved and Maggie Aldwin from the ISG has been re-elected as president of the network.

Since the General Assembly decided to have a new logo, there is a contest for all members of the member associations.
The logo will represent a dragon, since this fictional creature is often linked to the appearance of ichthyotic skin and it is also viewed in several countries and cultures as a benign entity, magic, powerful and able to donate invincibility to others.
The character will have to appear friendly, positive yet strong and enduring. A “nice dragon” is what we are looking for. Please bear in mind the logo will be used for the web and in presentations but also for printing, in documents such as letters, flyers and posters.
The logo in itself will have to respect the following requirements:
not too complex a drawing
using as few colours as possible (3-6 colours is fine, please avoid a simple bitonal scheme)
be readable also when printed small (down to 1 inch/2,5 cm)
printable/usable on both white and black coloured backgrounds
The contest is open from now and will close September 30, 2012.
The file will be sent to e-n-i@gmx.de as vector graphic (such as SVG, EPS, AI and similar).
The winning logo will be selected by eni’s Board of Directors and the result will be published on eni’s website (www.ichthyose.eu).

Then we thought about possibilities to make Ichthyosis more public and the idea of creating a day or week for Ichthyosis came up.
The Assembly decided a Raise Awareness For Ichthyosis day resp. week. The day should be November 19, the date of the signing ceremony at the German notary. May 16th, the founding date and September 1st, the first meeting of some European associations have been discussed as well but these dates are already taken by other celebrations.
November 19
Raise Awareness For Ichthyosis
RAFI-day (or week, if preferred)
On that day and/or the week around that day all activities that help to increase the degree of familiarity of and the awareness for Ichthyosis are very welcome!
Treasure hunts, bicycle tournaments, ball games, Parties, garage sales, concerts, the sale of pastry, cakes or drinks, any form of competition, whatever you prefer....

The last discussion was about a very unpleasant and annoying happening. Marie-Cécile Verly requested a passport and since 2009 most countries only allow new passports with biometric data. So she had her fingerprints scanned and when she came to collect her new passport the fingerprints they had scanned did not match anymore. The skin of her fingertips, the lining, changed due to the Ichthyosis. Now she has got a testimony from a physician, stating that her condition leads to constant change in her fingerprints.
Nevertheless she will not be allowed to go into the US without the biometric conformity.
In Germany the authorities recommend all persons that cannot give fingerprints (due to missing hands or other reasons) to have a preliminary passport issued, it’s valid only one year and there is no biometric data in it. People might not be allowed to travel to the US as well, but we do not know that yet.
This is not a solution; it’s just a ridiculous stopgap.
I will talk about this topic to the DEBRA international, they should have the same problem – and of course I will bring it into the next EURORDIS Board of Director’s meeting.

That was the official Assembly.
It was a wonderful time and I was very happy to meet all the attending representatives and maybe next year we will be even more.

For the next General Assembly we plan to join the Swedish Group for their family meeting in May. Since the date is not yet fixed, we will inform all member associations as soon as it is.