[Insert address]
Dear [Insert Decision Maker / Health Minister / Commissioner],
We are writing to you as representatives of children and families living with idiopathic short stature (ISS), a condition affecting the growth of children.
We respectfully but urgently request your support in the formal recognition of ISS as a medical condition to ensure that children living with ISS receive equitable access to the care and support they deserve.
This letter follows the publication of our Redefining ISS: Improving Confidence and Clarity report, developed from a first-of-its-kind collaboration between patient organisations and academic paediatric endocrinologists from Brazil and Italy. It represents the shared voice of our global community and sets out clear, practical steps that decision makers like you can take to change the lives of children with ISS.
What is ISS and why does it matter?
ISS is diagnosed in children whose height falls two or more standard deviation scores below the mean for their age, sex, and population, where no identifiable medical, genetic or endocrine cause can be found (1-3). Approximately 2% of children worldwide meet criteria for short stature, with more than half estimated to fall under the ISS category (1,2).
We have gathered compelling evidence of the emotional, social and psychological impact of ISS directly from the community.
- Research shows children with ISS aged 10 to 12 are 37% more likely to experience bullying, with an increased probability of loneliness of 19% for girls and 10% for boys, and those who experience bullying face an increased risk of mental, emotional, and behavioural difficulties in later life.3
- The 2025 EQUiPS study, drawing on conversations with caregivers of children aged 4 to 15 living with ISS in the USA, confirms these risks are playing out in real families: children face bullying, social exclusion, low self-image, and reduced confidence daily.
- The emotional toll is significant and too often goes unaddressed. One parent described their child feeling that being his size was "so life-ruining," and that he felt that "nobody cares about him." Another told us her son said he was "not sure life is worth living."
- These are not isolated voices: the ICOSEP 2025 Quality of Care Survey found that 70% of families reported the impact of ISS on their child's life is not properly recognised, and 35% identified access to mental health care as a significant barrier.
Our call to you
This is why formal recognition of ISS as a non-cosmetic medical condition in our country is so important.
The impact of unrecognised or untreated ISS extends well beyond height. Delays in diagnosis and treatment access create significant uncertainty for children and families. Beyond this emotional toll, affected children face a greater risk of hospitalisation for endocrine, nutritional, and metabolic disorders, reflecting a clinical burden that the current level of recognition fails to address (3).
Furthermore, caregivers and families struggle to access financial support or reimbursement for costs related to their child’s care. For these families, diagnostic pathways remain fragmented, referrals are delayed, and emotional support is rarely embedded in care.
Without formal recognition, children cannot access the evaluation, treatment, or psychosocial support they need. Therefore, we call on you to:
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Ministries and Governments
E.g. Germany’s Bundesministerium für Gesundheit
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Policymakers, Insurers and Regulators
E.g. UK’s The Cross-Party Parliamentary Group on a Fit and Healthy Childhood
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Commissioners
E.g. Individuals responsible for funding health and education at a local, regional and national level
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Review and update national health coverage to ensure ISS is recognised as a medical condition which can receive parity of support with other growth conditions experienced by children.
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Update national rare disease or children’s health plans to explicitly include ISS to ensure children benefit from improved support infrastructure.
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Formally classify ISS as a non-cosmetic, medical growth condition in national health policy and guidance documents.
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Ensure that patient-reported outcome measures (PROMs) capturing psychosocial burden are incorporated into national data collection on growth conditions.
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Fund the creation of an ISS national patient registry or incorporate ISS into national paediatric endocrine registries.
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Fund multidisciplinary ISS care teams, including access to paediatric psychology or counselling as a standard component of the care pathway.
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Mandate that any child whose height falls two or more standard deviation scores below the mean for their age is placed on a paediatric endocrinology pathway for further investigation.
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Ensure there are national clinical guidelines or quality standards for ISS that are shaped by and for the ISS community, including patient organisations.
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Mandate psychological screening as a step in the care pathway for ISS as part of national clinical guidelines or standards, with appropriate referral pathways to mental health services for children showing signs of emotional distress, social exclusion, or low self-esteem.
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Advocate for health insurers and reimbursement bodies to ensure policies recognise ISS as a medical condition which is eligible for reimbursement of support and care.
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Fund medical schools and professional societies to introduce ISS into all endocrinology or growth education content, including diagnostic criteria and referral processes.
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Mandate that growth monitoring at primary care level uses standardised tools (e.g., growth velocity charts) with explicit referral criteria when ISS is suspected.
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Fund positions for dedicated staff focused on psychosocial needs (e.g., nurse practitioners) that are available for inclusion in management plans of all children with ISS.
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Italy's experience shows both the progress that is possible and the work that remains. In March 2026, the Italian Medicines Agency (AIFA) formally approved full reimbursement by the National Health Service for a new treatment of ISS, subject to the specified conditions. This marks a significant step towards recognising ISS as a medical condition requiring treatment, rather than one of a purely cosmetic nature.
Yet with healthcare managed by 20 independent regions, national policy does not automatically mean equal access.
We call on you to follow this lead and go further, ensuring that recognition at the national level translates into consistent, equitable support for every child with ISS, wherever they live.
“We have always known that idiopathic short stature (ISS) goes far beyond a child’s height; it affects how they perceive themselves, how they are treated by their peers, and their overall life experience. The decision taken by the Italian Medicines Agency (AIFA) in March 2026 to recognise the need for new treatment options, eligible for full coverage by the National Health Service, is significant in recognising ISS as a genuine condition affecting real children.
However, as decisions on healthcare ultimately remain the responsibility of individual regions, national recognition does not automatically guarantee equitable access, and there is still much work to be done to ensure that no child is left behind because of where they live.” – Cinzia Sacchetti, A.Fa.DOC.
On behalf of the ISS community, we urge you to take steps towards addressing the unmet needs and barriers faced by children with ISS. This is not just about height. It is about ensuring every child with ISS has the opportunity to thrive.
Yours sincerely,
The Redefining ISS: Improving Confidence and Clarity project was created in collaboration with and funded by Novo Nordisk Health Care AG. The outputs of Redefining ISS: Improving Confidence and Clarity represent the views of ICOSEP and supporting patient groups. This letter is non-promotional and not specific to any treatment or therapy.
References:
- Wang Z, Gao Z, Huang Y, Li Z, Luo F, Li T, et al. Charting the growth of idiopathic short stature research: a 32-year bibliometric study of global advances. Frontiers in Endocrinology [Internet]. 2025 Nov 19;16. Available from: https://www.frontiersin.org/journals/endocrinology/articles/10.3389/fendo.2025.1667011/full
- Cohen LE. Idiopathic Short Stature. JAMA [Internet]. 2014 May 7 [cited 2019 Apr 16];311(17):1787. Available from: https://jamanetwork.com/journals/jama/articleabstract/1866124
- Juul A, Linglart A, Højby Rasmussen M, Lund Leunbach T, Pietropoli A, Pedersen M, et al. Impact of Idiopathic Short Stature (ISS) on children’s well-being. ESPE Abstracts [Internet]. 2024 [cited 2025 Nov 28];98. Available from: https://abstracts.eurospe.org/hrp/0098/hrp0098p1-68