Rare diseases
Thousands of people in Denmark are diagnosed with a rare disease each year, yet the field faces significant challenges. We need better conditions for research and treatment – and stronger focus on rare diseases in public and political debate.
Rare diseases are often overlooked, creating significant human, healthcare, and societal challenges.
Although each condition affects relatively few people, thousands of individuals in Denmark live with a rare diagnosis. Many face long diagnostic journeys, limited treatment options, and considerable uncertainty in their daily lives.
It is essential to ensure that patients with rare diseases are not overlooked in healthcare systems largely designed around more common conditions.
There is a need for more targeted research, improved access to innovative treatments, and stronger cross-border collaboration – as knowledge and patient populations are often limited at the national level.
At the same time, drug development for rare diseases plays a key role in the future of the Life Science sector.
Denmark has strong capabilities in research and development. By prioritising this area politically, we can both improve patient care and support innovation, growth, and job creation.
Ultimately, this effort is about health equity – ensuring that patients with rare diseases have access to timely diagnosis, high-quality treatment, and a dignified life.
Chair of the Danish Medicines Council: “Criticism is inevitable”
As Chair of the Danish Medicines Council, Birgitte Klindt Poulsen faces difficult dilemmas as part of the job. Meet the doctor tasked with ensuring new treatments while also making sure that every penny is put to the best possible use.
A cancer diagnosis revealed Ari’s rare syndrome: “Knowledge helps”
When Ari was diagnosed with colorectal cancer at the age of 38, it also led to an unexpected discovery: he has the rare hereditary condition Lynch syndrome. Ari hopes that greater knowledge about rare diagnoses can make life easier for patients in the future.
Stine Bosse: “The EU must collaborate more on rare diseases”
Stine Bosse highlights the need for stronger EU cooperation in healthcare, particularly in areas such as rare diseases where collaboration can improve outcomes and efficiency.
“We often encounter diseases we have never heard of before”
Rare diseases is far from rare for Elsebet Østergaard. She is a medical doctor and professor specializing in clinical genetics. Every day, she meets patients living with a rare disease, and it is not uncommon for her to encounter diagnoses she has never seen before.
Where are we in understanding and tackling rare diseases?
At first glance, rare diseases might seem hard to connect across the life sciences. But taken together, rare diseases are not rare; and studying them is shaping how we diagnose, treat and regulate healthcare in general.
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