{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,24]],"date-time":"2026-04-24T15:22:07Z","timestamp":1777044127072,"version":"3.51.4"},"reference-count":56,"publisher":"Frontiers Media SA","license":[{"start":{"date-parts":[[2026,4,24]],"date-time":"2026-04-24T00:00:00Z","timestamp":1776988800000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["frontiersin.org"],"crossmark-restriction":true},"short-container-title":["Front. Med."],"abstract":"<jats:p>\n                    Telomere biology disorders (TBDs) and short telomere syndromes are difficult to diagnose, requiring a combination of clinical acumen, gene variant analysis and ideally, telomere length. Severe phenotypes include the ultra-rare dyskeratosis congenita and related early-onset syndromes. More commonly, TBDs can present in adulthood with single- or multi-system fibrotic disease, apoptotic bone marrow failure or malignancy. In the general population, shorter telomere lengths are associated with chronic inflammation, fibrotic disorders, cardiovascular disease, malignancy and disorders of ageing. Diagnosis and expert multisystem care are important; TBD-related conditions require non-standard treatments, minimising immunosuppression and potentially profibrotic treatments. All too aware of the challenges TBD patients face and the urgent need for coordinated care, the patients group DC Action brought together patients, medical professionals and scientists: the \u201cTeloNet\u201d alliance, to share best practice and develop diagnostic and management pathways. This mini review describes the first TeloNet meeting, summarising current United Kingdom (UK) practice, in the context of global provision, drawing attention to challenges and improvements required for timely diagnosis, coordinated monitoring and care for people living with TBDs. TeloNet is UK-focussed but the challenges described have relevance across disparate nations and healthcare systems. Those with an interest in TBDs are invited to join TeloNet by contacting\n                    <jats:email>info@dcaction.org<\/jats:email>\n                    .\n                  <\/jats:p>","DOI":"10.3389\/fmed.2026.1780232","type":"journal-article","created":{"date-parts":[[2026,4,24]],"date-time":"2026-04-24T13:54:51Z","timestamp":1777038891000},"update-policy":"https:\/\/doi.org\/10.3389\/crossmark-policy","source":"Crossref","is-referenced-by-count":0,"title":["TeloNet is born: why all specialities need to be aware of telomere biology disorders"],"prefix":"10.3389","volume":"13","author":[{"given":"Hilary J.","family":"Longhurst","sequence":"first","affiliation":[{"name":"Dyskeratosis Congenita Action (DC Action)","place":["London, United Kingdom"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jane K.","family":"Paxton","sequence":"additional","affiliation":[{"name":"Dyskeratosis Congenita Action (DC Action)","place":["London, United Kingdom"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Hemanth","family":"Tummala","sequence":"additional","affiliation":[{"name":"Centre for Genomics and Child Health, Blizard Institute, Faculty of Medicine and Dentistry, Queen Mary University of London","place":["London, United Kingdom"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Duncan M.","family":"Baird","sequence":"additional","affiliation":[{"name":"Division of Cancer and Genetics, Cardiff University","place":["Cardiff, United Kingdom"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Josu","family":"de la Fuente","sequence":"additional","affiliation":[{"name":"Department of Paediatric Haematology, Imperial College London","place":["London, United Kingdom"]},{"name":"Department of Immunology and Inflammation Centre for Haematology, Imperial College","place":["London, United Kingdom"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Austin G.","family":"Kulasekararaj","sequence":"additional","affiliation":[{"name":"Department of Haematology, King's College Hospital, Denmark Hill","place":["London, United Kingdom"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Guruprasad P.","family":"Aithal","sequence":"additional","affiliation":[{"name":"NIHR Nottingham Biomedical Research Centre, Nottingham University Hospitals NHS Trust and the University of Nottingham","place":["Nottingham, United Kingdom"]},{"name":"Nottingham Digestive Diseases Centre, Translational Medical Sciences, School of Medicine, University of Nottingham","place":["Nottingham, United Kingdom"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jennifer A.","family":"Dickens","sequence":"additional","affiliation":[{"name":"Department of Medicine, Cambridge Institute for Medical Research, University of Cambridge","place":["Cambridge, United Kingdom"]},{"name":"Royal Papworth Hospital","place":["Cambridge, United Kingdom"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Pilar","family":"Rivera-Ortega","sequence":"additional","affiliation":[{"name":"Department of Respiratory Medicine, Royal Devon and Exeter Hospital","place":["Exeter, United Kingdom"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Ramsay","family":"Bowden","sequence":"additional","affiliation":[{"name":"Department of Genomic Medicine, University of Cambridge","place":["Cambridge, United Kingdom"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Joanna","family":"Large","sequence":"additional","affiliation":[{"name":"Department of Haematology, Kings College Hospital","place":["London, United Kingdom"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Inderjeet","family":"Dokal","sequence":"additional","affiliation":[{"name":"Centre for Genomics and Child Health Blizard Institute, Queen Mary University of London","place":["London, United 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