eni Meeting 2008

European Network for Ichthyosis Meeting in Copenhagen 2008

 

The second meeting for European patients associations was held on 15th of may 2008. In the run-up of the annual reunion of EURORDIS in Copenhagen in May, the “Iktyosisforeningen Denmark” invited to a satellite meeting for Ichthyosis in the community centre of Greve near Copenhagen. Vibeke and her family welcomed us warmly.

In total 14 representatives of patient associations from Denmark, Italy, Germany, Sweden and Switzerland. We were particulary glad to welcome three representatives from Norway and two from Great Britain for the first time.

Med Discovery

After a short introduction of each participant we had a big lunch. Afterwards a lecture was given by Dr. David Deperthes of Med Discovery, Lausanne, a small bio technical research company. His topic was the Netherton project, which deals with research on a potential active pharmaceutical ingredient for the Netherton syndrome (a rare and severe type of ichthyosis). The talk was especially interesting for two representatives from England and Norway, being affected by the syndrome themselves. In case of that syndrome there is a lack of a protein, which is a "protease inhibitor”. Med Discovery develops an active pharmaceutical ingredient against prostate cancer. This substance may perhaps replace the missing “protease inhibitor” of the Netherton syndrome as well. 
Many thanks to David Deperthes for his affecting enthusiasm. 

Liarozol, a new drug for Ichthyosis?

Liarozol is a new drug for ichthyosis, unfortunately not yet licensed. It has a similar effect like “Neotigason” but less side effects. Being rather suitable for women with desire for children and possibly suitable for EHK. We discussed in-depth how we can help to bring Liarozol on the markets. There are still several steps to be taken. The sponsor of Liarozole wants to sell the drug to another pharmaceutical company which might file the application at the EMEA.

Switzerland

The Swiss patients asociation for Ichthyosis has now an almost trilingual homepage and a French contact form. This produced new contacts to french speaking families. The association organizes an Ichthyosis weekend 2008 at the lake of Geneva. The newly printed trilingual Ichthyosis flyers were distributed. 

Will Ichthyosis still be represented in the EURORDIS-board by Italy in the future?

Flavio Minelli, from the Italian “Unione Italiana Ittiosi” is active in the EURORDIS board and was ready for his re-election at the EURORDIS conference. Although seven nations were represented on the eni meeting, only Germany and Italy have been members of EURORDIS and are allowed to vote. 

As there are so few ichthyosis patients in each European country we acknowledged the benefits of being a pan-European community. We discussed the advantages and disadvantages of each national group gaining membership to EURORDIS. 
The Italians have been a member for many years and the Germans since 2007. The Belgians also have membership (unfortunately no representatives were able to come to Copenhagen) and the Danish recently applied, but do not yet have a right to vote. The British are considering the possibility of joining, but recognize that it would be an additional task for the few volunteers who run their group.

Any new drugs for ichthyosis should have a better chance of getting licensed for the whole of Europe rather than in each country, e.g. the potential active pharmaceutical ingredient for Netherton’s syndrome might gain more success in Europe, rather than just in England where there are only a few people affected by this condition.

Denmark

Of course our hosts, the "Iktyosisforeningen i Danmark", were the biggest delegation: two men and three women. The Danish group decided for a EURORDIS membership and wants to demand for membership still in this year. Highly active several meetings were organised throughout the year. 

Great Britain: Netherton Day and Asian Day

It is always a surprise to learn how big some ichthyosis organisations are in other countries and the British support group (ISG) has over 430 affected members. These members are served by a board of seven volunteers who are themselves affected by ichthyosis or are parents of children with ichthyosis. The board meets up quarterly and has monthly telephone conferences. 
They are supported by a medical advisory council of seven doctors and two nurses, which meet twice a year. 

In 2007, their tenth anniversary was celebrated with a family conference attended by 240 participants. 150 stayed overnight and took great pleasure in spending an evening together being entertained and eating a superb candlelit celebratory dinner. 

This year, a September Fun Day was enjoyed by 43 affected families at Alton Towers.

Their next family weekend conference will be in May 2009 in Birmingham. All members will be invited to attend and participate in lectures and discussion groups led by their medical advisory council. Furthermore an Asian Day is planned for 2009 (the last was in 2006) and a Netherton Syndrome Day, to which the young Norwegian representative affected by Netherton’s syndrome was invited. The idea was suggested that the Netherton Day be called an International Netherton Day. 

The English group is also fairly active with fundraising, one reason being the wish to open an office staffed by an employee. For example they participated in the ‘2008 Walk for Skin’, which was organised by the British Skin Foundation. These walks took place in 9 different locations around the UK and approximately 90 individuals registered to walk for ichthyosis. The group anticipates raising approximately £3000 from this event.

Norway

Norway owns a surprisingly big and powerful patient organisation for ichthyosis too, the “Norsk Keratoseforening”. Although Norway counts only 5 Million inhabitants, there are 150 members registered in the organisation, friends and relatives can become member as well. Annual meetings of the members, quarterly meeting of the five board members were held. The Norwegian association takes special care for adults with ichthyosis.

Sweden celebrates its 20th anniversary in September

The Swedish “Iktyos Foereningen” celebrates its 20th anniversary from 5th till 7th of September. Congratulations!
Since the country is large, the Iktyos Foereningen is divided in twelve regional groups. The regional leaders meet up at the Regions Conference beginning of May. The organisation has one employee who is responsible for public relations. The Swedish representatives, Malin and her little son, had to leave early to arrive at home not too late. 

Impressions from Copenhagen

In the evening we went into town by train. We took a walk along the little mermaid, the romantic canals and the royal gurads who stand sentinel over the queens palace. Then we went to a historic restaurant, which was a blacksmith's shop in earlier times. We ate fresh fish and delicious asparagus and had good conversations. 

EURORDIS conference

We met Fabrizia Bignami on the EURORDIS conference. She is general observer for the European Organisation for Rare Diseases in the European Committee for Orphan Medicinal Products. She told us how a new orphan drug can get market authorisation in the European union. Probably there is still no official application filed for Liarozole. We do not know, since the applications are secret.

The EURORDIS conference was impressing. There were about 150 participants from 24 countries. We discussed several EURORDIS projects and a position paper about Centres of Expertise and European Reference Networks for Rare Diseases which is already on the EURORDIS website. See link below. 

Flavio won his election to the EURORDIS board of directors. We are glad that ichthyosis will be represented in this important European patients organisation.

Many thanks to Vibeke and her nice family who welcomed us so friendly in Copenhagen.
 

Text by A.Bruenner / Translation by K. Baer / Fotos by M. Aldwin & V.Poulsen

EURORDIS position paper about Centres of Expertise and European Reference Networks for Rare Diseases