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The Charity Commission for Northern Ireland
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22Q11 Northern Ireland

  • Income


  • Spending


  • Status


Charity no. 102573 Date registered. 19/10/2015

Public benefits

The trustees believe that all of our purposes satisfy both elements of the public benefit requirement. Note: In the remainder of this document the term 22q is used to refer collectively to chromosome abnormalities in the 22q region including but not limited to 22q11.2 deletion, 22q11.2 duplication, Ring 22, 22q13 deletion, 22q13 duplication,

mosaic 22q deletion, mosaic 22q duplication, 22q distal deletion and Trisomy 22 The direct benefits which flow from purpose one include earlier and more accurate diagnosis, more suitable care plans and an increased likelihood of legislation being passed to benefit people affected by 22q in Northern Ireland. Sharing the latest data from conferences, lectures and seminars relevant to 22q empowers those affected by helping them to become a specialist in their own rare disease which can lead to earlier diagnosis of life-threatening conditions. These benefits are primarily evidenced through feedback from patients. Additionally legislation passed in the interest of those affected by 22q will be on public record. The beneficiaries of this purpose are people living in Northern Ireland who have been diagnosed with 22q and their family and friends. There is no private benefit flowing from this purpose. The direct benefits which flow from purpose two include reduction of stress and anxiety among people with 22q in Northern Ireland and their carers. These benefits are evidenced through feedback from patients. This purpose does not give rise to any harm. The beneficiaries of this purpose are people living in Northern Ireland who have been diagnosed with 22q. They also include family members and carers of those who are diagnosed with 22q.

What your organisation does

22q11 NI provide emotional support and information to families affected by 22q 22q11 NI organise events for affected families 22q11 NI organise fundraising opportunities 22q11 NI writes media articles and gives interviews to local media to raise awareness of 22q11 NI 22q11 NI gets support from the Northern Ireland Rare Disease Partnership, Max

Appeal and 22q11 Ireland, in terms of information and advice and help to fund expenses to conferences and trips to Parliament in Westminster, London and Dublin where relevant. 22q11 NI seeks reliable information about 22q and disseminates this to families and clinicians and others involved in caring for and supporting affected families. 22q11 NI creates and maintains relevant contacts who enable advocacy. 22q11 NI follows the story of Lucia Cassidy, through social media, her achievements, symptoms and struggles as an advocacy tool.

The charity’s classifications

  • The advancement of education
  • The advancement of health or the saving of lives
  • The advancement of citizenship or community development
  • The relief of those in need by reason of youth, age, ill-health, disability, financial hardship or other disadvantage
  • Other charitable purposes

Who the charity helps

  • Carers
  • Children (5-13 year olds)
  • General public
  • Learning disabilities
  • Mental health
  • Parents
  • Physical disabilities
  • Preschool (0-5 year olds)
  • Sensory disabilities
  • Youth (14-25 year olds)

How the charity works

  • Advice/advocacy/information
  • Disability
  • Research/evaluation
  • Sport/recreation

Charity accounts & reports for financial year end 31 March 2018

Independent examiners report Charity accounts Trustee annual report

Charity accounts & reports for financial year end 31 March 2017

Independent examiners report Charity accounts Trustee annual report

Charitable purposes

1. To raise awareness and provide advocacy for those affected by 22q through dissemination of information to the general public in Northern Ireland and in particular those diagnosed with 22q, local medical clinicians and locally elected MPs and MLAs 2. To support and encourage people residing in Northern Ireland who are affected by 22q through the provision of recreation or other leisure time occupation for individuals, family and friends of those diagnosed with such a condition

Governing document

Trust Deed or Declaration of Trust

Other name

22q11 NI

List of regions

  • In Northern Ireland