Virtual Living Well with events 2021

Upcoming Virtual Sessions


Patient Empowerment / Advocacy Session

Thursday October 21st at 11am via zoom, this session will support self-advocacy, which is the ability to speak-up for yourself and the things that are important to you.

To sign up email: or join using the Zoom ID below.

Information session Via Zoom October 1st Friday 2021

A session specifically for people affected by Rare Chromosome and Gene Disorders and their families.

Unique is a small charity supporting, informing and networking with families living with a Rare Chromosome Disorders, or some Autosomal Dominant Single Gene Disorders associated with learning disability and developmental delay, among other symptoms.

To sign up email or call 0770447929 to

Parents & Carers Session  with guest speaker 
Mae Murray Foundation

September  Thursday 9th at 11am

via Zoom

The session part of the Rare Disease ‘Living well with…’ Programme is delighted to have the Mae Murray Foundation as guest speakers.

The Mae Murray Foundation has been set up to allow people of all ages and abilities to take part in activities, experience the world and enjoy friendship together in an inclusive environment.

Mae Murray Foundation recognise one another to be of equal and inseparable value, regardless of: – physical or learning ability; medical or undiagnosed condition; age or caring role.

Mae Murray Foundation will share information on wide range of innovative all-ability projects for different age groups on offer, as well as how they work to design and implement permanent solutions in everyday environments to break down unnecessary barriers to participation.


Come along and learn about the different projects happening and how you can join.

Email: to register



Social Café

August Wednesday 4th  at 11am via zoom, come along to our informal session  – an opportunity to meet others, share, connect and support. Open to all our rare disease community.

To join or for further information email:

Caring for your Mental Health

Listen to Professor O’Neill share tips and techniques on how to look after your mental health.



Living Well with…Programme ( Via Zoom)

Please see all free events below: 

The concept of the ‘Living Well with…’ programme is to offer a series of online events, geared specifically at people living with, caring for, working with or friends of someone with a rare condition. All sessions will be led by the NI Rare Disease Virtual Hub Support Team – Edel & Caroline – and will feature a host of guest speakers covering topics such as exercise, advocacy and mental health.

Details below of free events: 

3rd March @330pm – T’ai Chi delivered by Disability Sport NI.  Come along and try an Introductory session – suitable for all abilities.
12th March @11am –Rare Disease Parents & Carers Information Session, 
with Guest speakers from:
‘Contact’ & ‘The Family Fund ‘ Gain information on services available from Contact – a charity which supports disabled children and how to access funding from the Family Fund and meet up with other carers and parents.
26th March @11am – Rare Disease Social Cafe: this is a really informal session to give our rare disease community the chance to get together for a chat over Zoom.
31st March @3.30pm Love to Move – delivered by Disability Sport NI. Come along and try this Love to Move musical movement session, suitable for all abilities.

NOTE: If you would like more information or to sign up, please email or call 07704476929