Scoliosis is a curvature of the spine. The Netherlands has approximately 60,000 patients suffering from scoliosis. It is logical that there is an association to support those patients and to represent their interests, namely the Association of Scoliosis Patients. This association was founded in 1981 by patients and their parents and has more than 1,600 members, the majority of whom are patients themselves and the others are directly involved with them, for example as parents or caregivers.
Association of Scoliosis Patients for support and help
In addition to all those who want to be informed or have questions, the Association of Scoliosis Patients focuses on relevant social organizations, government agencies and other relevant authorities, healthcare providers and health insurers. In the work of the association, it aims to promote the medical, social and other interests of scoliosis patients in a broad sense.
Information provision and available materials
It does this, among other things, by providing information on a broad scale and, for example, organizing theme meetings at which experts give an introduction. The association also maintains a website with information about the association’s activities and the treatment of scoliosis. A book and an information DVD and a number of brochures are also available in the association’s webshop.
The book is structured in a question and answer format and can be read as a book or consulted per topic. The book is also available as an audiobook.
The association publishes a DVD with a lot of information about various aspects of scoliosis. The DVD called Very difficult if you have scoliosis is an important document for patients and people around them, but also for professionals. Young people, as well as parents, teachers, care providers and friends, also provide information on the DVD.
The eleven brochures that have been compiled also discuss many aspects of scoliosis, including information about exercise therapy, heredity and clothing and scoliosis.
A teacher’s manual called My twist is called scoliosis is available for information at schools.
The association also publishes a quarterly magazine that is sent to members and is also available separately in the webshop. A number of reports have also been published on the treatment of scoliosis.
An important part of the association’s work is bringing people with scoliosis and those directly involved into contact with each other. After all, talking to fellow sufferers and exchanging experiences can be enlightening, supportive and liberating.
Scoliosis information line
Another way to provide patients with direct information and support is through the Scoliosis information line. During four half-days, volunteers answer questions and make referrals if necessary and, above all, are a listening ear.
Membership and benefits
By becoming a member and supporting the Association of Scoliosis Patients financially, the association can better represent the interests of scoliosis patients. The more members the association has, the more government subsidy is obtained because it is based on the number of members. Membership entitles you to free receipt of the quarterly magazine and access to special information meetings. Members also receive a discount on publications and can enjoy a discount on health insurance premiums.
Lots of volunteer work and experience
Moreover, the activities such as information provision, contacts with fellow sufferers and an information telephone line are carried out by volunteers and the board members are also volunteers. Likewise, keeping the administration and maintaining the website is volunteer work. In all these tasks, the strength of the association lies in the experience of its employees.