Ireland and Scotland adopt national rare disease plans and Spain updates its national plan
On 3rd July, Health Minister Dr James Reilly launched Ireland’s National Rare Disease Plan for the next four years. The plan recommends creating a Clinical Care Programme and a National Office for Rare Diseases. The plan objective is also to offer residential care for children with rare diseases, provide means to access orphan medicinal products, increase rare disease awareness, develop a rare disease research network, support patient organisations and establish rare disease monitoring and reporting mechanisms to improve national and EU-level reporting.
As rare disease patients in Ireland often have to travel abroad to seek medical attention, the plan aims to reduce diagnostic delays caused by the lack of national expertise on rare diseases. The Clinical Care Programme will address the needs for specialist services. It will also serve to develop joined-up care to accompany rare disease patients throughout their therapeutic journey. The National Rare Disease Office will identify rare disease Centres of Expertise, offer assistance to patients and families through a helpline and conduct national rare disease surveillance. The Centres of Expertise will draw on multi-disciplinary competences to dispense comprehensive and expert care to rare disease patients. They will also offer education and training to healthcare professionals from all specialties in order for them to provide adapted care to rare disease patients and their families.
Consult the National Rare Disease Plan for Ireland 2014-2018
Last June, the Scottish government also presented its Implementation Plan for Rare Diseases in Scotland. Scotland contributed towards developing and launching the UK Rare Disease Strategy with England, Wales and Northern Ireland in October 2013. In accordance with this strategy, Scotland has elaborated an Implementation Plan for Rare Diseases addressing needs within its health service structure and in response to patient and clinician expectations. Providing services to rare disease patients is challenging in Scotland due to a significant rural and remote population.
The plan aims to accelerate diagnosis, facilitate access to health services and improve research on rare diseases and patients in response to the EU Council 2009 recommendation on rare disease action and the Scottish government’s 2020 Vision to provide sustainable and quality healthcare services across Scotland. The Implementation Plan for Rare Diseases proposes a number of services to assist and empower rare disease patients, from prevention to diagnosis and disease management.
Consult the Implementation Plan for Rare Diseases in Scotland
Spain has updated its national rare disease plan of 2009 proposing seven lines of action, including prevention and early detection of rare diseases, healthcare and integrated health and social care, promotion of research, training and information for professionals and rare disease patients and families.
Consult the rare disease national plan update for Spain (in Spanish only)