About Ågrenska
Ågrenska is a national centre of competence for rare diseases and other disabilities.
We are an idea-driven organisation that operates on a non-profit basis.
Ågrenska is beautifully located on the island of Lilla Amundön, just south of Gothenburg on the west coast of Sweden.
At Ågrenska children, adolescents and their families, as well as well as adults with disabilities, get to meet each other together with professionals.
All activities are based on a holistic approach for the purpose of optimising the lives of people with rare diseases and other disabilities.
Another vital task is the acquisition and spread of knowledge throughout society.
Ågrenska operates at a local, regional, national, and international level.
We collaborate with various organisations in the area,
such as the Centre for Rare Diagnoses West, one of Sweden’s six medical competence centres, where we contribute with our experience and expertise.
We co-operate on a variety of issues, such as parents and siblings’ meetings, guidance, and events such as the annual Rare Disease Day and other conferences.
Our regional activities include among others respite-care and camp activities.
Children and young people with disabilities need to have the chance to experience things which others – without disabilities – take for granted.
At the same time, their parents get the opportunity to take a break.
Therefore, we offer respite-care for children and young people with different disabilities during weekends, bank holidays and throughout the summer.
In this unique environment, participants get to meet the same group of peers and staff on a regular basis and engage in activities specifically put together to suit their conditions, needs and interests.
Young people also get the opportunity to practice independence before adulthood.
Our national activities also consist of several parts, one being the family program.
We know that having a child with a disability affects the life situation of the entire family.
This is particularly true if the child has a rare disease.
Each year we arrange some 20 family activities for families with children with various diagnoses.
During the family program, families from all over the country who have children with the same rare condition gather at Ågrenska.
Both the children and their parents and siblings take part in a program tailored to their specific needs.
The purpose is to share knowledge, meet others in a similar situation and exchange experiences.
Each activity is well documented, and the documentations are all made available on the Ågrenska website.
Parts of Ågrenska external operations are conducted at an international level.
This includes the United Nations.
Ågrenska has actively contributed to the work of implementing a UN resolution on rare diagnoses.
This resolution was adopted by the UN General Assembly in New York on December 16, 2021.
The UN resolution gives questions about rare diseases a broader and more holistic focus and a platform to work from – throughout the whole world.
Ågrenska continues to develop programs and activities for future efforts both nationally and internationally for people with rare diseases.
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