Cystinosis Ireland
@CystinosisIrl
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Irish registered charity dedicated to fundraising to support research into the rare disease Cystinosis. One day we will find a cure. #cystinosis. CRA# 20053796
Ireland
Joined March 2011
With just under two months left until the end of the year, we have almost reached our annual goal of raising €100,000. With just €15,000 to go, please help us by donating or organising a fundraiser 🩵 Contact mail@cystinosis.ie and we will support you with your fundraising 🌟
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It is #MedSafetyWeek and we want to share some information about the HPRA, Ireland's National Regulator for medicines, medical devices and health care products. The HPRA encourages everyone to report suspected side effects at https://t.co/dGrjKBWUJW💊
@TheHPRA
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#MedSafetyWeek starts today. This week, we will join other medicines agencies around the world to highlight the importance of reporting side effects. Whether you're a patient, a carer or a healthcare professional, we all have the power to make medicines safer. Be a
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Researchers at University of Sunderland have received £3.9M from MRC to take CF10 — a promising new treatment — into clinical trials. This builds on the pioneering work of the late Prof Roz Anderson. Learn more at https://t.co/PqPDckxZKZ
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Reminder: Updates to the Human Tissue Act mean organ donation rules have changed. For those living with cystinosis—who often need multiple transplants in their lifetime—awareness is more important than ever. Make sure your wishes are known and your loved ones are informed ‼️💚
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The purpose of this recently completed research was to identify the unique experiences faced by young Irish people in the school context. Thanks to all our donors and fundraisers who made this research possible. For more information - https://t.co/cJPjfgoqFU
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Every cystinosis journey is unique, with different challenges and experiences. No two stories are the same—sharing them helps build understanding and awareness❣️🧬 For more information, visit our website: https://t.co/Bcfu04jyVF.
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A huge thank you to our incredible sponsors for the hugely successful Ashbourne Golf Day on Friday 22nd August. It was our 11th annual Classic, forty teams competing in a "Champagne Scramble", with Niall Rynne's team coming out as the victors. https://t.co/Py2AfF4gxQ
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Find out more about cystinosis at https://t.co/Bcfu04jyVF and more about the campaign at https://t.co/B7MOurf85G.
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What do a baking loving photographer and a professional rugby player have in common? Both are Number 17. One in 17 people in Ireland live with a rare disease. Lucy Beckwith and James Lowe both have rare diseases and are part of the I am Number 17 campaign🧬
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The National Rare Disease Strategy 2025-2030 launch and a reminder that people with rare diseases “don’t transition, we need continuity of care” from paediatric to adult services. #cystinosis #raredisease
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What a beautiful day! The sun always makes an appearance at the Cystinosis Ireland Ashbourne Golf Classic ☀️ @AshbourneGolf
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Preparation is well underway for the 11th Annual Cystinosis Ireland Ashbourne Golf Classic. Thank you to everyone who has organised, supported, sponsored and signed up. We are looking forward to seeing everyone out on the course tomorrow.@AshbourneGolf
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The journal also featured an informative article which you can read here: https://t.co/awWA8UsPH2.
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Please spread this knowledge with friends and family as organ donation saves so many lives. Especially because those with Cystinosis will require one or multiple kidneys transplants during their lifetime❤️
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Remember that the next of kin will always have the final say so it is vital to talk to your family about your wishes. Find out more here:
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Under this new legislation, all adults in Ireland will be considered to have agreed to be an organ donor when they die, unless they have recorded a decision not to donate on the National Organ Donation Opt-Out Register or are in one of the excluded groups.
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The donation of an organ is an incredible gift that is life changing for the recipient and their families. Consent is at the core point of this new legislation.
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His project was selected as it demonstrates “significant potential to address unmet needs within these rare communities”. For more information on Francesco’s work please visit our Research page on https://t.co/7rNPA72Jdg
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Please read the article and help us to continue to raise awareness: https://t.co/uMwxWrEc1j Thank you! - LinkedIn - @ ORGESTRA / X – @ORGESTRA_DN
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