Guide to Medication and Benefits brochure rare diseases

Guide to Medication and Benefits brochure rare diseases

The brochure, which serves as a Guide to Medication, gives practical advice on obtaining, taking and storing medicines.

What questions should be clarified when the doctor prescribes a medicine for you, what tricks help to ensure you take medicines correctly and how medicines are best stored. These are some of the questions that the brochure answers.

While each individual rare disease seldom occurs, the fact that as many as 8000 such diseases are already known means that a relatively large number of people is affected by a rare disease. In Switzerland, it runs to 580,000 people – as many as suffer from diabetes in this country.

One of these people is A. Briguet. She was 10 when the first attacks occurred. Her hands, feet and sometimes even her knees would swell up. Briguet and her parents consulted an allergy specialist. Over the course of a year, the doctor took regular blood samples until he was finally able to establish a diagnosis: hereditary angioedema, a rare disease that is estimated to affect between 10,000 and 50,000 people. “There are times when things are going well, and times I find things difficult,” says Briguet. Initially she was given expensive medication that had to be injected intravenously and kept in the refrigerator. That was complicated. When she went on vacation, the first thing she did was to look for a refrigerator. Some years later, another medicine came onto the market, one that does not have to be refrigerated and is given as an intramuscular injection. “That changed my life, because now I can travel without worrying.”

Along with the photo of A. Briguet in the brochure, there is an interview with Professor Matthias Baumgartner, director of the research centre for children at Zurich’s paediatric hospital, who specializes in the treatment of rare diseases. The brochure also touches on the framework conditions for the development of medicines to treat rare diseases and, with reference to Niemann-Pick disease, hairy cell leukaemia and porphyria, examples are shown of where advances have been made and where further research is needed.

The brochure on Rare Diseases – Advances in Diagnosis and Treatment was produced in collaboration with ProRaris - Alliance Maladies Rares Suisse.

It appeared for the first time in 2017 and was reprinted in 2018. The brochure is one of a series of publications on the benefits of research. Further brochures are available on multiple sclerosis, rheumatic diseases, cancer, dementia, transplantation, depression, hepatitis C, osteoporosis, cardiovascular diseases, diabetes, psoriasis and paediatric medicines.

Each brochure examines a particular disorder. Patients and their family members are provided with information on the pathogenesis of the disease, the treatment options and current developments in research.

The guide to medication and the brochure on rare diseases are available in French and German and are displayed in more than 2000 doctors’ practices.