Everything about our association
BOKS non-profit association = Belgian Organization for Children and Adults with a Metabolic Disease non-profit association
BOKS non-profit association is an umbrella organization for all metabolic diseases that are individually too rare to receive support and interest from the general public. BOKS non-profit association wants to provide information and help to improve the quality of life of people with a metabolic disease.
The association was founded in 1994 by a courageous couple of parents. In 1987 they were told that both their sons suffered from a life-threatening metabolic disease. They made their way through the maze of requests for medication, special nutrition, etc. The couple got in touch with other parents and decided to set up a non-profit association called BOKS to inform and support each other.
4 pillars
The operation of the non-profit association BOKS is based on 4 pillars
1. Advocacy
BOKS non-profit association aims to lighten the worries of patients and their families. That makes a big difference for them. We attend conferences, create files and participate in debates.
BOKS non-profit association is committed to:
- Simplifying legislation and administration.
- Making the often vital medication, which is usually expensive, reimbursable.
- Encouraging research into diagnosis and treatment. This in collaboration with European organisations.
- To optimize the quality of life of children, adolescents and adults and to safeguard their well-being.
- Collaborating with governments, policy organisations, (para)medical world, expertise centres, pharmaceutical companies and European organisations.
- Gaining recognition in the political and medical world.
Both in Belgium and at European level, the non-profit association BOKS has helped to free up more resources for research into metabolic diseases.
2. Raise awareness and inform
As a patient organization, we want to inform patients, their families and environment, as well as the general public about everything related to metabolic diseases. We try to do this by providing information in an accessible way via our information portal. First of all, our goal is to give patients and their families a better understanding of their disease, and to inform them about treatments that are in development, clinical studies that are about to be started or are ongoing, etc.
In addition, we also organize a BOKS information day every year, where we discuss a wide variety of topics that are relevant to our members.
We also inform our members on a regular basis via our infoBOKS. In this magazine we always discuss topics that can be useful and interesting for our members.
In order to raise awareness of metabolic diseases among the general public, we publish videos and testimonials via our social media. The more people are aware of the problems surrounding metabolic diseases, the better we can find support to direct certain changes at the policy level.
3. Support
Immediately after the diagnosis, people need care. These newly diagnosed people and/or their families (family) need a listening ear. But later on, they sometimes need very specific and individual care. People have very specific and personal questions, need extra support with the grief after the diagnosis, death, etc.
BOKS can provide individual assistance in all phases of the disease process.
4. Member activities
As a patient organization, the non-profit BOKS association brings its members together on special family days and weekends. This contact with fellow sufferers has a healing effect. Members talk to each other and share experiences. Parents or people with a metabolic disorder recognize themselves in the stories of other parents, people with a metabolic disorder and who understand what they are going through.