The Association of the British Pharmaceutical Industry (ABPI) has called Northern Ireland’s recently published ‘Rare Diseases Action Plan’ as a big step forward towards ensuring people with rare diseases receive better diagnosis, treatment and care.

Responding to the publication, Marion Laverty, Public Affairs Manager for ABPI Northern Ireland said: “We particularly welcome the commitment to review the Managed Entry of New Medicines process. The ABPI looks forward to working with the Government on this review, to make sure Northern Ireland patients can benefit from new rare disease medicines as they become available.”

Health Minister Robin Swann has launched the first Northern Ireland Rare Diseases Action Plan on 22 March. The Action Plan sets out 14 high-level actions that will be taken forward over the next year, working with healthcare professionals and educators, researchers and commissioners, as well as rare disease patient organisations and those personally affected by rare disease.

Swann said: “In January this year, I joined my counterparts across the four nations of the UK to publish the UK Rare Diseases Framework which outlined national priorities for improving the lives of those affected by rare conditions.

“The rare disease community includes newborns, children and adults, people living with both genetic and non-genetic conditions, people who have received a diagnosis, but also those who may never be diagnosed. Whilst around 80% of rare diseases have an identified genetic origin, it is important to recognise that other factors such as disordered immunity, infections, allergies, deterioration of body tissues and organs, and disruption to development in the womb can cause rare diseases.

“The Northern Ireland Rare Diseases Action Plan is a good example of the power of co-production and an integrated care system approach where key stakeholders and delivery partners have come together to agree these important actions. It means that more people with a rare disease will benefit from better co-ordination of care, improved access to clinical trials and research, increased education and training, and collaboration among specialist teams across these islands.”

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