LEONA e.V. ...

... is a support group for parents of children with all kinds of rare chromosome disorders active in German-speaking countries.

Name

Why LEONA? Leona was born on 2nd April 1992 in the 43rd week of pregnancy. She died in her mother’s womb, one day before birth. Eleven weeks earlier, she had been diagnosed with the rare chromosome disorder trisomy 18. Leona’s parents founded the LEONA contact shelter, which was the origin of the later association.

Growth

LEONA grew steadily in the past years. Having 31 members in 1996, there were already 179 members, a total of 300 contact families (affected families, registered in our database) and 120 syndromes in 2000. At the moment (January 2016) we have more than 1050 contact families, about 440 of them being members. Our database includes addresses mainly from Germany and its German-speaking neighbour countries for more than 390 different syndromes as well as undiagnosed cases.

Main aims

The main aims of our association are bringing parents of same or similarly affected children into contact with each other (also abroad, if they like to) and helping parents to cope with the difficulties that may occur in daily life with a child with a rare chromosome disorder. It is very important for us that parents who were told that their child has a rare chromosome disorder do not feel alone in their situation. From our pool of experiences of affected parents, as well as through a network of contacts, LEONA offers them help and support.

Along with the exchange of knowledge it is very important for us to show ways how to handle the fear of a possible early death of the child and to cope with the grief for children who already died.

We want to offer our experience and knowledge also to those parents, who find out during pregnancy that their child has a chromosome disorder or who want to consider the question of prenatal diagnosis. Contacts to affected families may be helpful in this time, when a decision has to be made.

Activities

Every year in autumn the big families’ meeting is taking place as our highlight. Getting to know each other and exchanging experiences is the heart of this meeting. Besides that there are many offers like courses for siblings, discussion groups for mourning parents, lectures of a human geneticist from our committee of experts and various other discussion groups.

On the LEONA website parents find – among a lot of different information - a discussion forum only accessible to members and contact families, where they can share their experiences.

In autumn our annual report “Einblicke” (insight) is published containing reports of children written by their parents, tips and interesting addresses. This report is free for parents of affected children. Additionally, two or three times a year there is a newsletter with current information and dates.

Board of parents

Still almost the whole work within the LEONA association is done by parents of affected children absolutely voluntarily. In April 2009 we have installed a part time office to support us in administrative work. Since 1997 there has been a committee of experts comprising of doctors, human geneticists, therapists and midwifes who support the approximately 45 active volunteers.

Members of LEONA are in charge of information stands at different fairs and events all over Germany to continue making the group known and to make public aware of the problems of children with rare chromosome disorders.

International contacts

As we are concerned with very rare disorders, European and also world-wide cooperation with other support groups is very important for us. In case we don’t find suitable addresses in our own database, we try to help the parents by asking other support groups such as Unique in Great Britain, Valentin in France or also CDO in the United States - just to give some examples.

We are member of Eurochromnet, the network of support groups based in Europe and active on behalf of people with rare chromosome disorders and Eurordis, the european organisation on rare diseases. This is a very important possibility for us to increase networking and to intensify cooperation.

Contact

When affected families want to obtain information or addresses from our database they just have to contact us. Our help is free and parents don’t necessarily have to become members of LEONA.

If you would like to contact us to find information about a special disorder, please mail to international@leona-ev.de.

(January 2016)