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PROJECT-SUPPORT SWITZERLAND

2022-2023-CHE-SDG 4 / Swiss Foundation for People with Rare Diseases

SDG 4: Hochwertige Bildung

Swiss Foundation for People with Rare Diseases, Schlieren, Switzerland

About rare diseases

Only individual rare diseases are rare, together they are extremely numerous.

Rare diseases can be life-threatening or result in chronic disability. 80% of rare diseases are genetic and require complex diagnostic work. For most rare diseases, the causes are not yet clear.  

A disease is considered rare if it affects no more than one in 2000 people. There are more than 5000 rare diseases. In total, about half a million Swiss people suffer from them. There is still no prospect of therapy for the vast majority of rare diseases.

 

General

The Swiss non-profit Foundation for People with Rare Diseases conducts research and education in the field of genetics, and through genetic investigations, creates the basis for individual diagnosis or treatment of the rare diseases as well as counselling for patients and those seeking advice. The foundation promotes the expansion and deepening of knowledge about rare diseases, and strives for medical-genetic excellence.

The Foundation is the legal entity of Switzerland's first Centre for Cardiovascular Genetics and Gene Diagnostics (www.genetikzentrum.ch). The Genetics Centre specialises in the diagnosis, research, and therapy of genetically caused rare diseases, in particular aortic diseases.

The goal in genetic diagnostics is to offer the best possible genetic clarification and to find the disease-causing mutation for each assigned patient. This is done using technologies that ensure efficient and reliable mutation detection at the highest level of quality. The activities of the Genetics Centre are entirely in the interest of those affected and can save human lives.

 

Project-support

Project: Teaching, training, and further education

The Foundation promotes excellent, nationally, and internationally recognised research, university teaching, and laboratory medical training. In doing so, it not only helps people with rare diseases, but also supports the education and further training of young academics and junior researchers.

They are active in university teaching in the field of medical molecular genetics (www.genetikzentrum.ch/Lehre.htm), imparting specialised and methodological knowledge both theoretically and practically. In addition, they supervise master's and doctoral theses, which are integrated into their research.

The Foundation's genetics centre also offers training places for students and other trainees. These training places require corresponding infrastructure, time-consuming supervision, and expensive materials, which cannot be sustained without financial support from the private sector.

 

Website: Swiss Foundation
for People with
Rare Diseases

Website: Centre for
Cardiovascular Genetics
and Gene Diagnostics

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