Number 54 • January 2015



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Frambu Resource Center for Rare Disorders


Frambu1, a private foundation funded by the Norwegian government, provides specialized services for people with rare disorders through a National Resource Centre.

Frambu’s vision is to provide leading-edge expertise, knowledge and services in the field of rare disorders for individuals through their entire life cycle from childhood to old age.

The objectives of Frambu are to collate, develop and communicate knowledge about rare disorders and disabilities on behalf of individuals, both with and without a rare disorder, their close/immediate family and the professionals who work with them, so that children, adolescents and adults with impaired abilities can live a life in harmony with their condition, aspirations and needs.

The National Centre organizes its services into the following core areas: specialised tailored courses, summer Camps for children and adolescents, outreach information and counselling services on a local and national level and research and development. These services are supplementary to the regular treatment and care to which every citizen is entitled.



Frambu caters to more than 120 different rare disorders.

Specialized Courses


Courses at Frambu are organized according to specific disorders, groups of disorders or topics that may be relevant to many disorders. While attending a course, people stay at Frambu and come together for lectures, group discussions, consultations and joint activities. Children, including siblings, attend day care and school on site at Frambu, and are supported by play therapists. Courses offered at Frambu are free of charge for the families.

We meet the users in their own environment


Frambu professionals visit users, their families and the professionals who work with them in their own communities. Collaboration with local health services and staff ensures that people with a rare disorder and their families receive treatment, care and services appropriate to their needs within their local community. This service is also provided free of charge.

Popular summer camps


Each summer Frambu arranges four camps for groups of 40 to 50 children and adolescents with rare disabilities, without their accompanying parents. These extremely popular camps last for one to two weeks and enable youngsters to meet others in the same situation as themselves, to share experiences and to build a network of friends and acquaintances. Frambu strives to enable participants to challenge their own boundaries and to discover new possibilities in themselves.

Research and development


Research and development is another of Frambu’s activities. The work involves surveying, collating and organizing the knowledge base around rare disorders, gleaning material both from practical experience and from Frambu’s day-to-day operations. The aims of our developmental work at Frambu are threefold: to deepen our knowledge both of the specific disorders we work with and of ways of coping with a rare disorder and to contribute to the development of high-level expertise in the field of rare disabilities. To this end, Frambu collaborates with educational institutions and centers of expertise in Norway and abroad.

Information


People with a rare disorder, their immediate family and professionals may contact Frambu by e-mail or telephone for accessible, relevant and professionally reviewed information about the rare disorders for which Frambu caters. Frambu also produces information materials about individual disorders, groups of disorders and topics relevant to many disorders. These resources may be ordered at our website or by direct request to Frambu. The staff of the library at Frambu can also provide guidance on relevant literature and helpful websites. Frambu’s information materials are free of charge for people with a diagnosed disorder and their immediate family.

One family’s experiences with Frambu


The following is a father’s testimony about their experience with Frambu. Their youngest son, who now is 6 years old, was diagnosed with Smith-Magenis Syndrome (SMS)2 as a toddler. They have two other sons too.
“Frambu is a very important resource we as a family and our support staff have had good use of. We, as a family, have attended two family courses. One was directed toward families with a rare chromosome disorder in general, the other towards Smith-Magenis syndrome. Our oldest son has also attended a sibling camp, and the grandparents have attended two courses for grandparents.

Our family has also received guidance through participating in a project about SMS and behavior, where our son with SMS has been one of the subjects. The fact that our son has been followed so closely, has given Frambu an insight into him and our family that has been an important resource in the dialog with our support staff, a dialog that often is demanding. Both staff from the kindergarten and the special educational services have attended courses at Frambu. And a special educator, a nurse, and a social worker from Frambu have visited the municipality on different occasions and given counseling and information about SMS and our son’s challenges, needs and positive traits.

In general, we perceive Frambu’s services to be of a high interdisciplinary standard, and they have a good connection with their user groups, which give them a solid practical foundation. They recognize real challenges and the problems those create in our daily life. Frambu has also several times given us written statements to attach to applications for resources or other aids we need. Our case workers have also had the opportunity to contact Frambu directly if they have any questions or concerns.

The courses we have attended have given us much relevant knowledge and a network of people in similar situations as us. We also believe that through our contact, Frambu has increased their ability to give advice and help to others. We always receive a high level of service and professionalism with sincere commitment from Frambu. One example is when they arranged a meeting for families and friends of families who had a child with SMS. This meeting was intended to be informal allowing attendees to ask questions and obtain information about SMS and the challenges as parents we live with. The parents of children with SMS were not present, making it easier to ask questions they normally wouldn’t ask us or ask if we were present. Initiatives like this shows that Frambu understands and acts according to the families situation.

We could, of course, wish that Frambu had more resources and capacity, especially regarding supportive services in the local community and research. The different diagnoses groups are very small and it is hard to create an understanding about the different phenotypical problems in the schools and municipalities in general. More knowledge is needed both for parents to meet our responsibilities and for the professionals who are supposed to support us as a family.”
For more information, contact Wencke E.Grepperud (Wencke.Grepperud@frambu.no)


1 http://www.frambu.no. Frambu is located in Ostmarka, 17 south of Oslo.

2 en.wikipedia.org/wiki/Smith–Magenis_syndrome


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