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 firstname.lastname@example.org or call 07704476929
Meet others from the rare condition family and their carers informally and have a cuppa together. An opportunity to arrange regular meetups for the Armagh area if there is enough interest. Being delivered by locally based NIRDP volunteers ♥
Before Christmas, NIRDP wrote to the Secretary of State for Northern Ireland asking for reassurance that access to medicines, especially those specialist drugs needed for rare diseases, would be maintained in the event of a No Deal Brexit.
Her reply is below:
Response – SoS – Ms Walker – MC-19-83
Also, the following Written Statement has been issued by the UK Minister of State for Health, Stephen Hammond: https://www.parliament.uk/business/publications/written-questions-answers-statements/written-statement/Commons/2019-02-25/HCWS1358/
Essentially, these confirm that Northern Ireland has been included in the UK wide contingency plans; and access to medicines and medical supplies (including for clinical trials) should be secure, safeguarded by the provision of:
- additional stockpiles in case of delays to ferry crossings;
- air transport for time critical supplies;
- prioritisation of medical supplies in the ferry spaces which government has purchased.
If anyone has a particular worry, contact us on email@example.com, and we will follow up.
The Foyle and NW forum (NIRDP) meeting took place on Saturday 19th May and it was great to welcome old and new faces to the group. There was lively discussion about issues affecting those with rare diseases with particular reference to:
- Support for carers available via the health and social care trusts
- Importance of raising the profile of rare disease by telling our stories – thanks to Anita McDowell for allowing her story to be shared via the Derry Journal. Attendees were encouraged to utilise 10,000 more voices initiative to share their patient experience
- Courses offered by recovery colleges and how to influence their prospectus
- Challenges associated with travelling outside NI for medical appointments
- Challenges for children and parents accessing appropriate educational support with rare conditions. Signposting to SENAC is advised but need to be aware the service is in high demand and early intervention is important .
- Education Authorities are working under tight budgetary constraints and access to Statutory Assessment and the Statementing process and subsequent provision of support can be delayed.
We look forward to hearing more about the potential for an EDS and associated conditions conference that is being proposed by EDS UK with support from NIRDP.
The group will continue to meet quarterly, next meeting will be planned for September with details to follow.
Rare Disease Day takes place on the last day of February each year (29th February itself being a rare day). Rare Disease Day is about raising awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.
We know that it’s not that rare to have a rare disease, but that’s not how it feels when you and your family experience that odd illness that nobody knows much, if anything, about. We know how important it is to come together and share experiences, to learn from each other and to amplify each other’s voices. We know the importance of working together to make change happen.
Today, NIRDP are holding events, hosted by the Mayor of Ards and North Down Council, and the Mayor of Derry City and Strabane Council. Many thanks to them for their help and hospitality. On Monday we host the 4th Joint North South Conference on Rare Disease at Riddel Hall, Belfast. We are all busy, and delighted to be so.
We hope you can join us- at an event, on Facebook or Twitter. Take some time to acknowledge how awesome you are, and the progress we’re making together. And, if you can, grab a slice of cake to celebrate!!