Grant of over £100,000 from the Alexion Charitable Foundation boosts ambitions to grow the number of Roald Dahl Nurse Specialists supporting children with serious illness and rare diseases in the UK.

It's hard for most people to imagine what life is like for a family caring for a child who is seriously ill or diagnosed with a rare disease and regularly juggling ten, fifteen, even twenty or more appointments across a variety of agencies and specialists. Even the professional teams who are specialists in their specific field only see a small snapshot of their lives and healthcare journey. And few can appreciate the anxiety and confusion families live with in between appointments – fear that they may not have understood a vital piece of information, or maybe failed to ask a crucial question, or perhaps should be back in A&E or checking up on a symptom or medication or next move. This is, though, the all-too-common experience for the growing number of families caring for children with medical complexity (CMC) – that's those children, diagnosed or undiagnosed, with chronic long-term conditions involving multiple specialities.  But today, a growing number of Roald Dahl Nurses offer families like these a bespoke form of personalised care, helping them navigate the overwhelming healthcare journey by coordinating and joining them in appointments, chasing up results, and supporting them through each stage of the process at home and in hospital. They are established in hospitals across the country thanks to Roald Dahl's Marvellous Children's Charity who have been fundraising to establish Roald Dahl Nurses in the NHS for over 30 years, with a focus on complex, lifelong and often rare conditions that are underfunded and under resourced.  The Alexion Charitable Foundation (ACF) was founded five years ago on Rare Disease Day 2020 by Alexion, AstraZeneca Rare Disease. It is committed to bringing hope and belonging to people affected by rare disease and to address health disparities within and among the rare disease community. ACF is proud of its partnership with Roald Dahl's Marvellous Children’s Charity, supporting the efforts of Roald Dahl Nurse Specialists under its Barriers to Care pillar which, among other objectives, seeks to expand access to trained professionals serving in a patient navigator role.  "Roald Dahl’s Marvellous Children’s Charity is absolutely delighted to be the recipient of one of the Alexion Charitable Foundation grants," says Louise Griew, the charity's Chief Executive. "Their support makes an enormous difference to our work going forward and as we establish more Roald Dahl Nurses specialising in complex medical conditions.   "Every child deserves the opportunity to experience the best childhood possible, and every family deserves to access the specialist care and support they need to provide that,” adds Louise. “But achieving that is a constant battle for too many seriously ill children with rare and complex health conditions across the UK.  “We know the impact of living with a serious, rare or complex condition goes far beyond the medical diagnosis. It has broad-reaching implications on the child's life and education and affects the physical and mental health of families and care givers, too. Our mission goes beyond just expert clinical care. We also provide the emotional and practical support that empowers families to navigate their journey more confidently. Families tell us every day that the support they receive transforms their life. They know we couldn't do this without the support of our partners and grant bodies like the Alexion Charitable Foundation."