70 Young Members in the Finnish RP Society

The Finnish RP Society is one of the oldest RP associations in the world. It was the founding member of IRPA (now called RI, Retina International) and it will celebrate its 30 anniversary in year 2003.

It is estimated that there are aprroximately 5000 people who suffer from different retinal degenerations in Finland. At present, the society has about 550 members with retinal degenerations and 70 supporting members. The average age of the members is somewhere between 50 and 55,which typically is considerably less than in other organisations of the blind. For the past few years the number of members has been quite constant with very little growth.

In the beginning of the year 2001 the member register shows the following figures of those members belonging to the age group 35 or below:

Although we did not take the average age of this age group, it is likely that the average age is towards the upper end, in other words little under 30 years of age.

The distribution between males and females in this age group correlates with all the members since the figure is about half and half there as well.

The whole population in Finland is slightly over 5 million, so the number of members is quite high compared to the corresponding figures in most other countries. There is no evidence that retinal degenerations would be more prominent in the country but this kind of activity could be argumented by the long history of the society and its information to ophtalmologists and public awareness. About half of those diagnosed with retinal degenerations and applying for membership, get information about the society through their eye doctors.

As the country is so big and sparsely populated, it is difficult to get young people to participate regularly in different events, not even to think about regional activities like in Germany. According to the feedback from the young members, the most important thing the society provides is the up-to-date information about the retinal degenerations and the research. This is in form of a quality biannual member magazine and other information material produced by the society.

It is a proven fact that a young person struggling alone with his or her problem need the information and also the support and experiences from other people in the similar situation. However, the threshold is quite high to join older and "more blind" people. This is why they need activities that they feel themselves comfortable with. In most cases they live quite normal lives studying and working and not having so much time to devote for this issue.

Every year the society organizes a get together for new members. There are usually some young people participating in these events, but since there is no regular activity organized for them they won't participate in annual meetings or events that they feel are too organisational.

The society has a close cooperation with the Federation of the Visually Impaired which organises two-module adaptation courses for people diagnosed with retinal degenerations. These courses are very important and many of the participants join the society after the course.

The society concentrates on special themes in its activity each year. In year 1999 the theme was the youth. There were two gatherings for about 10 young members. The other event was organised in late September parallel with the International RP day. The event consisted of lectures about RP and its effects in everyday living conditions, career planning, studies, employment and technical aids. We even tried to have a videoconference meeting with another group of young RP-people from another European country but we had very little success in finding interested partners. The situation would have been different now when we have initiated the Retina Europe Youth network, which would have been very interesting to know a couple years ago.

There are some plans to organise something interesting to young people this summer. It is necessary to offer them something unusual and exciting and invite them very personally to come along.

In the board of the society there are no young members, if the undersigned is not taken into consideration. It is hard to activate young people and try to get them involved when there is only one person doing that. Hopefully the promising European network has enough interesting things and experiences to offer the young people from Finland too.

Helsinki, 15^th January, 2001

Pekka Rantanen

Vice President

The Finnish RP Society

e-mail: vp.rantanen@nic.fi

Secretary

Retina Europe Youth Group