Urddad-Foundation Answers Northern Ireland Consultation on Rare Disease Plan


  1. Do you think the action to empower those with rare diseases will allow

                       Northern Ireland to meet its commitments?

          Theme 1: Empowering those affected by rare diseases



The UK Strategy aims to ensure improvements across the whole patient journey, from the patients’ first contact with the GP through to diagnosis, support and management of a rare condition

The Commitments in the strategy emphasise the fundamental role that the patient, supported by their family/carer and/or patient organisation will play during this journey. Patients and their families are often those with most knowledge about their condition, its management and services they require. They are often supported by a wide range of groups: these can be global networks and patient organisations working at a national level as well as those based in Northern Ireland

The third sector and particularly patient organisations can help provide the knowledge many organisations provide…

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About jigsawtree

Hi my name is Terence Hoey I am CEO of The Ultra Rare Disease Disorders & Disabilities Foundation LTD a non for profit charity our address is Palmerston Road Sydenham Belfast Co Antrim Northern Ireland BT41QD

Posted on January 27, 2015, in Uncategorized. Bookmark the permalink. Comments Off on Urddad-Foundation Answers Northern Ireland Consultation on Rare Disease Plan.

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