Spotlight your work! Rare Horizons is looking for the best ways to support young people with a rare disease as they move from paediatric to adult care, and to share what works well across Europe.
Rare Horizons: Transition in Action is a grant programme, funded by Novo, that invites not-for-profit patient organisations to submit a transition of care project that has made a difference for young people during this period. The Rare Horizons Steering Committee will independently assess every eligible submission. Up to five grants of up to €2,000 each may be provided, subject to Steering Committee recommendation and Novo’s applicable review and approval processes.
Every eligible submission will receive written feedback from the Steering Committee and may be included in a free-to-access digital Rare Horizons Transition Care Best Practice Library. All organisations that submit will be invited to an announcement event in 2027, where grant recipients will have the opportunity to present their projects.
If your organisation helps young people with rare disease prepare for adult care, we want to hear from you!
Who can submit: Registered not-for-profit patient organisations in Denmark, France, Germany, Ireland, Italy, Lithuania and the Netherlands
What we are looking for: A project, tool, service or approach you have already delivered, or are delivering now, that supports young people with a rare disease moving from paediatric to adult care
Deadline: 23:59 CET on 21 December 2026
Language: Please submit in English only. You are welcome to use AI translation tools.
Is your organisation unable to accept funding from a pharmaceutical company? You can still submit, receive feedback from the Steering Committee and be considered to be showcased in the Rare Horizons Transition Care Best Practice Library.
Rare Horizons was established and is funded by Novo. Steering Committee members receive honoraria from Novo. Novo is not involved in setting focus areas, defining assessment criteria or developing Steering Committee outputs. All grants are subject to Novo’s approval processes. Steering Committee recommendations do not constitute grant approval.
This programme is open only to organisations based in the countries listed above. Read how we use your data here.
Questions? Contact RareHorizonsSecretariat@intenthealth.co.uk
Novo’s “Rare Horizons” is a first-of-its-kind European initiative uniting rare disease youth advocates, patient organisation representatives, clinicians, nurse specialists and psychologists, with a mission to support shared decision-making that empowers adolescents and young adults to self-manage their transition from paediatric to adult care.
The ‘transition’ period is an especially pivotal moment for those living with rare diseases but is unfortunately also a time where care is fragmented, inconsistent, or even neglected. Adolescence and early adulthood bring significant lifestyle changes that affect how young people manage their health – while the adult care system is typically reactive rather than proactive, often characterised by limited access to specialists, poor coordination of care, and limited expertise in rare disease. This leaves young adults and their caregivers to navigate an unfamiliar healthcare system at a time of major life change, putting them at risk of poorer health outcomes.
Established in 2025, the Rare Horizons Steering Committee comprises of rare disease multidisciplinary teams (doctors, psychologists and nurses) and people living with rare diseases, caregivers and patient organisations, across Europe. The initiative brings together voices from across four of our focus therapy areas – haemophilia, sickle cell disease, Turner syndrome/growth hormone disorders and XLH. Intentionally designed to sit above individual disease areas, Rare Horizons focuses on practical tools and empowerment for the patient and carer community – building on and complementing our disease-specific policy initiatives such as the SCD Policy Lab’s European charter on sickle cell transition care.