8 March marks International Women’s Day, a moment when organisations around the world take stock of progress — and the gaps that remain — on equality across society, including in science and innovation.
One of the clearest fault lines is who gets to do research, who leads it, and which questions get asked. Globally, women make up roughly one in three researchers, according to data compiled by UNESCO.
Across Europe, the pattern is familiar: women comprise just over 25.4 % of self-employed professionals in science and engineering, and they remain underrepresented in several scientific and technical fields.
As careers advance towards higher positions, a “leaky pipeline” phenomenon is observed: in the latest She Figures report, the European Commission notes that women hold less than one‑third of the highest academic positions, with around 26% in decision‑making as heads of institutions.
When representation shapes evidence
These figures not only affect science from the work conditions, progression, or gender representation standpoint, they also translate into real impact on people’s lives. According to the World Economic Forum, women spend 25% more years of their lives in poor health than men, despite living longer on average.
They tend to be later diagnosed, with the symptoms being managed later and their care deferred.
Additionally, Genetic Alliance UK stresses that therapies and interventions are thought for male physiology, treating the female body as an “outlier” rather than the norm — a problem with clear implications for diagnosis, dosing, side‑effects and outcomes.
Rare diseases and the reality of inequality
In rare diseases, where these delays to diagnosis are already common, any additional discrimination factor can be especially hindering. A Europe‑wide Rare Barometer survey led by EURORDIS found that the average time from first symptoms to a confirmed rare disease diagnosis is close to five years — with being a woman listed as one the factors associated with longer diagnostic delays.
Behind these averages are patients’ day‑to‑day realities: multiple appointments across different specialties, repeated tests, and symptoms that may be minimised or attributed to stress or common life events. When diagnosis is delayed, so is the chance to access specialist follow‑up, symptom management, and — where they exist — trials and therapies.
For rare diseases, where data is inherently limited spotting differences based on sex, age or other factors can be especially difficult.
Care, work and visibility
These inequalities in rare diseases not only affect patients. EURORDIS’ first Europe‑wide survey on the social impact of rare diseases reports that 64% of carers are mothers and 25% are spouses — with nearly a third of carers reported spending more than six hours a day.
This often-unrecognized labour has knock‑on effects — from reduced working hours and career disruption to financial strain and emotional exhaustion — widening inequalities with consequences that can accumulate over years.
How ERDERA is embedding gender equality
For ERDERA (the European Rare Diseases Research Alliance), sex and gender are part of research quality: they shape who is represented in data, how symptoms are interpreted, and whether findings translate into safe and effective care for everyone living with a rare disease.
Within ERDERA-funded activities, applicants are expected to detail how sex and gender diversity are considered in their research content, from the questions asked to the way data are analysed and reported.
This expectation is designed to be consistent across the funding process, including call requirements, proposal assessment, and the monitoring and reporting of funded work. From its research team, ERDERA has reported a 45,3% researchers who identify as men versus 54,7% who identify as women.
ERDERA is also aiming for gender (and geographical) diversity in governance and decision-making structures, alongside the right expertise and safeguards to manage conflicts of interest. This matters because who is in the room influences which assumptions are tested, which evidence is prioritised, and how patient-centred needs are weighed.
“International Women’s Day is a timely reminder that gender in science is not a siloed issue,” says Daria Julkowska, ERDERA Scientific Coordinator. “In rare diseases, it links directly to whose symptoms are recognised, whose data are collected, and who is able to take part in research. ERDERA’s responsibility is to use the tools we have to support more rigorous and more inclusive research, so results are more relevant for people living with a rare disease and their families. It also means ensuring women have a strong place in the scientific and decision-making roles that help shape ERDERA’s priorities, because who leads and who is in the room influences the questions research asks and the impact it can have.”
