THL-blog: Lack of knowledge makes rare diseases expensive to treat while increasing human suffering

This is the first blog in English that the team Disability in Society has been publishing. You can find more blogs within the disability field in Finnish or Swedish languages in the THL blog. 

Rare diseases are the opposite of common diseases. About 6,000-8,000 rare diseases exist, covering all fields of medicine. Altogether, they affect 6-8 percent of the population.

The greatest challenge in the treatment of rare diseases is a lack of knowledge. The specific disease involved is often not suspected, and the patient does not get access to appropriate diagnostics and treatment.

THL coordinates field of rare diseases

There are great challenges facing sufferers of rare diseases in inclusivity, coping with everyday life, and equal access to services. THL coordinates national activities with the support of the European Union Committee of Experts on Rare Diseases. Finland's health and social services system is on the threshold of unprecedented structural change. It is extremely important to consider those with rare diseases when the reforms are implemented.

The authors are Chief Physician Satu Wedenoja and Development Manager Iiro Toikka from THL's Disability in Society team.

The article is part of the Disability in Society blog series

The Disability in Society blog series deals with phenomena connected with disability and services for persons with disabilities in our society. The concept of disability has changed with time. Issues that are important today include human rights, participation, self-determination, access, and accessibility.

Lack of knowledge makes rare diseases expensive to treat while increasing human suffering (THL-blog)