Fair for Rare NI – help establish a Rare Disease All Party Group at NI Assembly

Fair for Rare NI – help establish a Rare Disease All Party Group at NI Assembly

image of Fair for Rare NI – help establish a Rare Disease All Party Group at NI Assembly

This campaign run by the Northern Ireland Rare Disease Partnership will enable people to easily find and get in touch with their Member of the Local Assembly (MLA), asking them to help establish a Rare Disease All Party Group (APG) so that local politicians can collectively support people who live or work with rare, or hard to diagnose conditions.

The Rare Disease APG would provide a much-needed voice at the NI Assembly for this much under-represented group, raising issues affecting the community and additionally increase awareness of rare conditions within the NI Assembly. Working together in this way MLAs could ...

This campaign run by the Northern Ireland Rare Disease Partnership will enable people to easily find and get in touch with their Member of the Local Assembly (MLA), asking them to help establish a Rare Disease All Party Group (APG) so that local politicians can collectively support people who live or work with rare, or hard to diagnose conditions.

The Rare Disease APG would provide a much-needed voice at the NI Assembly for this much under-represented group, raising issues affecting the community and additionally increase awareness of rare conditions within the NI Assembly. Working together in this way MLAs could influence positive change for those individuals and families affected by rare conditions. 

We are asking our members and supporters to contact their local MLAs to encourage them to pledge their support. 

A disease is defined as rare is Europe when it affects less than 1 in every 2,000 people.

1 in 17 people will be affected by a rare disease at some point in their lives. This amounts to more than 110,000 people across Northern Ireland. 

Rare diseases are characterised by a wide diversity of symptoms and signs that vary not only from disease to disease, but also from patient to patient, suffering from the same disease. Relatively common symptoms can often hide underlying rare diseases, leading to years of misdiagnosis. Rare diseases not only affect the person diagnosed; they also impact families, friends, carers and society as a whole.

Now is a pivotal moment for the NI Rare Disease Community with the release this year of the UK Rare Disease Framework and the development of a NI action plan designed to improve experiences of people affected by these conditions. 

It is therefore so important that politicians are aware of the challenges faced by people living with rare conditions so they can represent their constituents effectively and influence change.

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Ask your MLAs to give their Voice to a Rare Disease All Party Group at NI Assembly

Please ask your MLA to register interest in an initial meeting to establish a Rare Disease All Party Group at NI Assembly taking place on Wednesday 26th January 2022 using our email template.

You can personalise the email so your message will have more impact if you can add why this is important to you.

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