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TSC Ireland https://tscireland.org Supporting each other Fri, 19 Apr 2024 08:25:28 +0000 en-US hourly 1 https://wordpress.org/?v=6.5.2 Rare Disease Day 2024 https://tscireland.org/rare-disease-day-2024-2/ Fri, 01 Mar 2024 18:13:29 +0000 https://tscireland.org/?p=9023

Read the inspiring story of our wonderful Mary Vasseghi and the superb research she is conducting on TSC in Ireland with Future Neuro. Mary is a key figure in our TSC Ireland committee and is doing exceptional work to improve the lives of everyone in Ireland living with TSC.

Rare Disease Day 2024 – FutureNeuro (futureneurocentre.ie)

Watch this video for more about Mary’s journey in the world of TSC research

]]> Rare Disease Day 2024 https://tscireland.org/rare-disease-day-2024/ Fri, 01 Mar 2024 17:13:32 +0000 https://tscireland.org/?p=9013 We supported the Rare Diseases campaign that launched on Rare Disease Day (February 29th) in the Irish Independent and online at HealthNews.ie

Rare Diseases looked at all things going on in the Rare Disease community from exciting treatment developments to advocating for change and recognition to shortening the diagnostic odyssey and featured insightful content from Rare Disease Ireland, EURORDIS, Rare Disease International, Science Foundation Ireland, Alexion, Alnylam Pharmaceuticals and more

The full supplement is available to read here:

https://www.healthnews.ie/rare-diseases/

The TSC Ireland article is available here:

http://www.tinyurl.com/4erux44f

]]> Tuberous Sclerosis Complex & Epilepsy Management Across the Lifespan https://tscireland.org/tuberous-sclerosis-complex-epilepsy-management-across-the-lifespan/ Fri, 01 Mar 2024 16:08:42 +0000 https://tscireland.org/?p=8999 Insights From Paediatric & Adult Epilepsy Nurses

We are delighted to welcome Claire Behan and Ann Connolly two Epilepsy Advanced Nurse Practitioners based in St James’s Hospital and Tallaght University Hospital respectively. Please join us on the night for what promises to be a very informative and interesting session on a topic that is relevant to so many living with TSC.

If you would like to submit a question for the speakers in advance please email info@tscireland.org

When: Tues 19th March, 7-8pm

Where: Online via Zoom – click the link below to view a recording of the webinar

]]> Family Fun Day 2024!! https://tscireland.org/family-fun-day-2024/ Wed, 14 Feb 2024 10:19:46 +0000 https://tscireland.org/?p=8986 Save the date!

When: Saturday May 11th

Where: Fota Wildlife Park, Co. Cork

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More details to follow here and on our FaceBook page. We would love to see as many families and individuals affected by TSC as possible in Cork! Great opportunity to meet others in the same boat and have a fun day out together…..

]]> Sleep & TSC Webinar Part 3 https://tscireland.org/sleep-tsc-webinar/ Sun, 11 Feb 2024 21:55:56 +0000 https://tscireland.org/?p=8978 Part 3: Strategies for Sleep

You can access the 3rd part in our Sleep Webinar series below as Dr Stacey Bissell brings us some more useful insight into how sleep is affected in TSC and useful strategies particularly around medication, work and school.

]]> TSC: Diagnostic Criteria, Surveillance and Management Recommendations https://tscireland.org/tsc-diagnostic-criteria-surveillance-and-management-recommendations/ Tue, 30 Jan 2024 10:22:13 +0000 https://tscireland.org/?p=8954

This information copyright ® TSC Alliance. Used with permission.

]]> TSC Ireland Family Fun Day 2023 https://tscireland.org/tsc-ireland-family-fun-day-2023/ Thu, 18 Jan 2024 12:05:24 +0000 https://tscireland.org/?p=8906 The National Stud, Kildare

We had a wonderful day out at the National Stud and Japanese Gardens in Kildare on 15th Oct. The sun shone on a beautiful crisp Oct day and definitely added to the experience! We enjoyed an interesting tour of the stud and grounds and had the chance to feed carrots to some of Irelands most famous racehorses! The playground was explored by the younger attendees. A delicious lunch was enjoyed by all in the restaurant followed by the option of trying out the new Racehorse Experience. The day was a lovely relaxed opportunity for those affected by TSC and their families to meet, chat and get to know each other.

We look forward to many more Family Fun Day to comes!

]]> Epilepsy & Behaviour Journal https://tscireland.org/epilepsy-behaviour-journal/ Mon, 15 Jan 2024 10:21:43 +0000 https://tscireland.org/?p=8912 January 2024 Issue

Current Issue Table of Contents: Epilepsy & Behavior 樂威壯 (epilepsybehavior.com)

Some articles in the above issue are available for free as Open Access.

]]> Development and Validation of TSC-PROM https://tscireland.org/development-and-validation-of-tsc-prom/ Mon, 15 Jan 2024 10:14:05 +0000 https://tscireland.org/?p=8909 Understanding the impact of tuberous sclerosis complex: development and validation of the TSC-PROM | BMC Medicine | Full Text (biomedcentral.com)

]]> Designing rare disease care pathways in the Republic of Ireland: a co-operative model https://tscireland.org/designing-rare-disease-care-pathways-in-the-republic-of-ireland-a-co-operative-model/ Tue, 05 Dec 2023 10:13:53 +0000 https://tscireland.org/?p=8895 Background: Rare diseases (RDs) are often complex, serious, chronic and multi-systemic conditions, associated with physical, sensory and intellectual disability. Patients require follow-up management from multiple medical specialists and health and social care professionals involving a high level of integrated care, service coordination and specified care pathways.

Designing rare disease care pathways in the Republic of Ireland: a co-operative model | Orphanet Journal of Rare Diseases | Full Text (biomedcentral.com)

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