The third edition of the Turner Syndrome Course for Health Professionals was held in Madrid last September, organised by the Madrid Turner Syndrome Association (ASTM) together with the deputy directorate-general for humanisation, care and patient safety of the Madrid regional health ministry. It ran for four hours and was aimed at family doctors and nurses, but also at internists, endocrinologists, cardiologists, gastroenterologists, gynaecologists and neurologists working in the region’s public system. The talks were given by specialists from Hospital Universitario La Paz: Juan Pedro López Siguero, Paloma Ferreiro, Silvia Iniesta and Dr Lisbona. The slides are published openly on the association’s website, as PDF and PPTX, so any clinician can read them without having attended.
The programme was not a textbook review. The association built it from the feedback of those who attended the previous edition, held in October 2025, and this year it covered when to suspect the diagnosis and order a karyotype, clinical cases, gynaecological health and reproductive options, assessment and follow-up in adulthood, and educational issues. The ASTM’s own write-up sums it up in one line: the course dealt with “our great struggle, when to suspect the diagnosis in order to request the karyotype”. The association adds the figure that frames the problem: 38% of diagnoses are made in adulthood, with key treatment years lost along the way.
The numbers used in the talks explain why training the first point of contact matters. Short stature appears in almost 100% of cases; hearing loss in 36% to 84% depending on the series, and middle-ear infections in 24-48%. None of those signals is exotic in a primary care surgery, but they are only found if someone looks, measures and decides to order a test.
The most uncomfortable moment came in the block on transition to adult life. One of the slides, by Paloma Ferreiro of paediatric endocrinology at La Paz, cites the estimate that only 4% of adult women with Turner syndrome routinely receive every recommended screening when no organised transition exists. The international guideline published in 2024 by the European Society of Endocrinology and the Pediatric Endocrine Society recommends precisely the opposite: karyotyping with a minimum of 30 metaphases when typical signs are present, and an individualised transition pathway starting in early adolescence. The gap, then, is not one of knowledge.
For anyone who cannot attend the in-person session, the Madrid region also keeps a free one-hour online course on the condition at the Escuela Madrileña de Salud. As of today the platform shows 68 enrolled students. It is a sensible door for a clinician who wants a quick refresher, but it should be read for what it is: an open resource, with no public data on how many of those enrolled are health professionals or how many finish it.
It is worth separating what we know from what we interpret. We know the course exists, that it is in its third year, that its materials are public and that the association treats it as “an annual priority”. We do not know how many clinicians attended, whether the training changes referrals, how many cases are diagnosed earlier in Madrid, or how many adult women receive full follow-up: there are no public attendance figures, no outcome evaluation and no regional case registry. The interpretation, then, is this: training the first level is necessary but not sufficient. Without a clear referral route to endocrinology and cardiology with experience in Turner syndrome, and without a reference unit for adults, four hours of teaching dissolve by the next on-call shift. That a regional government has spent three consecutive years training its primary care staff is a signal; that it publishes nothing on what changes as a result is the open question.
Sources: Madrid Turner Syndrome Association, “III Curso Síndrome de Turner para profesionales de la Salud” (write-up and slides, September-October 2026), turnermadrid.es; Escuela Madrileña de Salud, Comunidad de Madrid, course “Síndrome de Turner”, escueladesalud.comunidad.madrid; and Gravholt CH et al., “Clinical practice guidelines for the care of girls and women with Turner syndrome: proceedings from the 2023 Aarhus International Turner Syndrome Meeting”, European Journal of Endocrinology 2024;190(6):G53-G151, doi:10.1093/ejendo/lvae050.
