- 16
- 3 455
NI Rare Disease Partnership
United Kingdom
เข้าร่วมเมื่อ 3 ธ.ค. 2021
Rare Stories - Voices of the 1 in 17 NIRDP Introducing Julie Power Vasculitis
Rare Stories - Voices of the 1 in 17 NIRDP Introducing Julie Power, founder of Vasculitis Ireland Awareness (VIA). Julie's story discussed symptoms, the diagnosis odyssey, and the importance of the patient's voice, These are the stories of the Rare Disease Community who face extraordinary challenges with strength and grace every day. By lending our ears and hearts to these narratives, we can contribute to a more inclusive and supportive society for all.
มุมมอง: 321
วีดีโอ
Rare Stories - Voices of the 1 in 17 NIRDP Introducing Dr Stephanie Duguez
มุมมอง 141ปีที่แล้ว
Rare Stories - Voices of the 1 in 17 NIRDP Introducing Dr Stephanie Duguez a Senior Lecturer in Personalized Medicine at Ulster University where she leads the research group in neuromuscular health. Dr Duguez's film discusses the importance of patient engagement, Rare Disease research, its challenges, and much much more. ' #rareaware #1in17 #rarediseases
Rare Stories - The Voices of the 1 in 17 - SED
มุมมอง 138ปีที่แล้ว
Rare Stories - Voices of the 1 in 17 nirdp are delighted to introduce Saul & Jane. Saul lives with a rare condition SED - Spondyloepiphyseal Dysplasia Congenita. Saul's film discusses independence, inclusion, and positivity with an added fantastic sense of humor -Saul's film speaks for itself! #RAREAWARE #1IN17
The Voices of 1in17 Rare Stories William Duddy - Bill Lecturer in Stratified Medicine Bioinformatics
มุมมอง 248ปีที่แล้ว
Rare Stories - Voices of the 1 in 17 NIRDP are privileged to share Rare Stories Film featuring William Duddy - Bill Lecturer in Stratified Medicine (Bioinformatics), Bill Shares a personal and powerful story, Bill's interest in rare diseases stems from the experience of having a brother with the muscle wasting disease, Duchenne muscular dystrophy. This experience pushed him towards a career in ...
Rare Stories - The Voice of the 1 in 17 Ehlers-Danlos Syndrome
มุมมอง 397ปีที่แล้ว
Rare Stories Voices of the 1 in 17 is delighted to share the film from Rhoda Walker who lives with Ehlers-Danlos Syndrome. Rhoda talks about resilience and that no one should be disadvantaged because of the rarity of their condition and the challenges of rare!! 'Rare Stories' offers an intimate and moving perspective that is too often overlooked. As we share these powerful narratives, we aim no...
Rare Stories - Voice of 1 in 17 Lucy & Zoe
มุมมอง 195ปีที่แล้ว
Rare Stories - Voices of the 1 in 17 Northern Ireland Rare Disease Partnership wish to introduce Lucy & Zoe who live with a rare condition -FOP - Fibrodysplasia Ossificans Progressiva, as twins they are 1 in 2 billion affected by FOP. They discuss their amazing bond as sisters, sharing the importance of independence and resilience, knowing first-hand how incredibly isolating and frustrating it ...
Rare Stories - The Voices of the 1 in 17 Antiphospholipid Syndrome
มุมมอง 112ปีที่แล้ว
Rare Stories Voices of the 1 in 17 Northern Ireland Rare Disease Partnership shares today the film from Angela who lives with rare condition - Antiphospholipid Syndrome - Angela shares her story including the relief of finally receiving a diagnosis & how important it is for Health Professionals listen to the patient who is often an expert in their condition.
Rare Stories Voices of the 1 in 17 Today
มุมมอง 163ปีที่แล้ว
Rare Stories Voices of the 1 in 17 Today Northern Ireland Rare Disease Partnership shares today the film from John who lives with rare condition - Fibrous Dysplasia. John talks of his decades-long diagnostic odyssey and the urgent need for a NI Rare Disease Registry "The 'Rare Stories' series is more than just a collection of videos; it's a testament to the resilience, courage, and spirit of in...
Rare Stories - The Voices of the 1 in 17
มุมมอง 372ปีที่แล้ว
Rare Stories - Voices of the 1 in 17 introducing the 'Rare Stories' film from Mandy who lives with the Rare Condition Ehlers-Danlos Syndrome. Mandy's story is an inspiration and one which despite involving a lifechanging diagnosis shows us a powerful and positive story so representative of the the NI Rare Disease Community. Our Rare Stories series is a reminder that behind every statistic, ther...
Voices of the 1in17 - Rare Stories
มุมมอง 298ปีที่แล้ว
Voices of the 1in17 - Rare Stories On this carers week @NI_RDP would like to introduce Anne-Marie who shares a Rare Story of living with the uniqueness of a rare condition and its challenges every single day having identical twin daughters with the rare genetic condition called Phenylketonuria (PKU). In shining a light on the lived experiences of those navigating rare diseases, 'Rare Stories' o...
The Voices of the 1in17 - Rare Stories
มุมมอง 196ปีที่แล้ว
The Voices of the 1in17 Rare Stories Film featuring Dr Shane McKee Consultant in Genetic and Genomic Medicine Northern Ireland Regional Genetics Centre - Dr McKee talks about the ‘Diagnostic Odyssey’ of rare disease patients; the need for a Rare Disease Registry in NI; the importance of the voice of lived experience; rare disease research and much, much more. The 'Rare Stories' series is a remi...
Voices of the 1 in 17 - Rare Stories
มุมมอง 305ปีที่แล้ว
Voices of the 1 in 17 - Rare Stories Introducing Dermot Devlin, who lives with a rare disease called Mucopolysaccharides Morquio. @MyWayAccess "Our 'Rare Stories' series is a reminder that behind every statistic, there is a person with a unique story. These are the stories of people in Northern Ireland who face extraordinary challenges with strength and grace every day. By lending our ears and ...
Rare Disease Day 2023 Webinar
มุมมอง 152ปีที่แล้ว
Webinar of Rare Disease Day 2023 On behalf of Rare Diseases Ireland (RDI) and Northern Ireland Rare Disease Partnership (NIRDP), we would like to invite you to join us at the annual North-South Rare Disease Day virtual celebration on Tuesday 28th February from 130pm to 3pm being screened from the Long Gallery, Parliament Buildings, NI Assembly. The event is being sponsored by All-Party Group on...
Launch of Rare Stories, Voices of The 1 in 17.
มุมมอง 317ปีที่แล้ว
Launch of Rare Stories Film Project- Northern Ireland Rare Disease Partnership, Rare Stories, Voices of The 1 in 17. A videogram documentary by Andrew Mc Combe
A poem for Rare Disease Day
มุมมอง 822 ปีที่แล้ว
A poem for Rare Disease Day to help raise awareness of the challenges faced by those living with a rare condition. Share with your friends...someone you know may be struggling alone! Contact us for support 💛 info@nirdp.org.uk
NI Rare Disease Partnership, WE’RE HIRING! An exciting opportunity CEO.
มุมมอง 182 ปีที่แล้ว
NI Rare Disease Partnership, WE’RE HIRING! An exciting opportunity CEO.
Truly inspiring. Thank you for sharing your experience Julie x
'promo sm'
Dermot, you were the first person I met with Morquio all those years ago and it had a great impact on me. You’ve been a friend to all of us. Keep up the great work Dermot xxx
Dermot, I rem you as a little boy when I would visit my dad in Greencastle. You are a fantastic young man who speaks so clearly & eloquently and has a very important message to us all. Let's hope those in charge are taking note & make changes, to make your life better as well as for others. Ann. (Martin Eddie!)
This was very informative, thank you so much for sharing. 💜💜💜
Dermot 👏🏼💜
Very interesting
You DO matter, mate. You’re truly inspirational to so many. Thank you for the insight.
What an ambassador you are for all of us Dermot
Beautifully produced piece of work, how lovely to give these people a platform to share their stories.