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Danish Youth with Haemophilia Meet in Cyberspace |   |
Los Bleedos was launched at a session on "Recruiting Young People into NMOs" at the World Congress. This is a transcript of the presentation in which the official announcement of Los Bleedos was made.
by Christian Krog Madsen, editor of Los Bleedos International
Introduction to Los Bleedos
On 1 October 2004 the Danish Haemophilia Society launched a community website, called Los Bleedos, for young members of the organisation. The website hosts discussions between its users and it features a chat room. Each user on the site has their own personal profile, where they can write about themselves and upload their own photos. Each profile also has a guestbook, where other users can send short messages.
The aim of Los Bleedos is for users to share their experience about living with a bleeding disorder with one another, and hopefully provide a means for them to support each other and exchange ideas. Also, the website is used actively to plan, promote and evaluate real-life youth group activities.
The website was developed and is being run by a group of volunteering members of the Danish Haemophilia Society and the Danish Society for Epilepsy. Actually, the website consists of a common portal, which acts as the home page of the website, and two subsites, one for young people with bleeding disorders and one for young people with epilepsy. The former subsite is called Los Bleedos.
To support the volunteers during the development period of the project, a full-time project consultant was employed. Her tasks were primarily that of a facilitator as well as taking care of administrative duties.
The project started in September 2003 and was closed in February 2006. The website, however, continues to be updated and maintained. Initial funding for the 2½ year project was provided by the Danish Ministry of Social Affairs.
Reasons for starting the project
In Denmark, like many other countries, attracting the involvement and commitment of young members is difficult. Young people already have many activities in their life, like school and work, sports clubs and social events. By starting the project that led to Los Bleedos, the Danish Haemophilia Society attempted to create a supplement to existing youth activities, by offering new ways to participate in the work of the organisation. In the Los Bleedos project, members can take on a range of roles and responsibilities: being an editor, writing articles, designing web pages, or moderating a forum. All of these tasks help build skills that can be useful in both academically and professionally. Also, the participants gain experience that they can use on their resumes to promote themselves in a job seeking situation. Furthermore, experience shows that members who are active in the organisation while they are young are more likely to be active later on as well.
Results so far
With the correct approach, we have found it is possible to recruit young members and have them put in a big effort. The new medium, i.e. the internet, appeals to individuals, who might not otherwise have participated in NMO activities, but subsequently also join traditional activities.
As a side-effect we have gained new insights into the composition of the target audience and their interests and expectations through user surveys and focus group interviews conducted in the project.
At the end of April 2006 we have more than 450 users, 68 of those on Los Bleedos. This should be compared to an estimated target audience of at most 40-50 people. Every week, 30 to 40 people log in to the site. More than 1000 messages have been written in the forum and about a quarter of those are on Los Bleedos. This represents a 500% increase over an existing forum on the organisations homepage.
The future
Building on the experience with the Danish website, we would like to expand Los Bleedos to the rest of the world. We invite young people with bleeding disorders from around the world to join Los Bleedos International, the English-language version of Los Bleedos, which was officially launched at the WFH 2006 World Congress. We hope the new site will help promote cooperation and exchange of ideas between youth groups from all over the globe. Users are encouraged to contribute ideas, articles and take an active part in the discussions to make this site a prime resource for all young people with haemophilia.
The web address of Los Bleedos International is WWW.LOS-BLEEDOS.NET.
Note: the presentation slides are available in PDF format.
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