From cloudy days to golden rays! 🌤️ Today, the sun's shining bright, a stark contrast to last month's sea swim with colleagues at RARE Ireland. 🌊 What a difference a month makes! Here's to embracing the sunshine while we keep raising awareness of #RareDisease.☀️

We need a permanent home for our genetics services Rare Diseases Ireland RARE Ireland #genomics

Thank you Pituitary Ireland for inviting us to be part of your conference today. Well done on a very successful event 👏

We are thrilled to announce our first Gala Ball. Tickets on sale soon #SaveTheDate

Great initiative, well done Rachel Crowley Rare Disease Clinical Trial Network, Ireland Dr Suja Somanadhan RAiN Rare Diseases Ireland and everyone involved #ThinkRare

#GetRareAware We are calling on Government for urgent action to expand the newborn heel prick test screening services provided in the first days of life to babies born in Ireland. Support us by visiting getrareaware.ie.

The “Get Rare Aware” campaign is urging the government to expand newborn screening. NBS is vital for the early detection and treatment of many rare diseases. The launch starts with a webinar for Dublin/midlands areas Register on this link bit.ly/GRA-Dublin-Mid… Rare Diseases Ireland

Superb workshop of the #rare #disease Patient Forum at Department of Health today. Thank you Minister Anne Rabbitte TD for speaking openly about where implementation can happen for rare diseases in Ireland. #frontrow

We are delighted to support this campaign. Expanded newborn screening will save the lives of many Irish children #GetRareAware

#NFawarenessday meet Ella who lives with NF Microdeletion Syndrome, a rarer form of NF1 which affects her in many ways. Ella struggles daily with the impacts of NF but she never gives up #NFfighter NFIreland

Have you registered? An online workshop for Carers of people living with a rare disease(s) and/or SWANs #NI #Ireland hosted by Queen's University Belfast 🎓. Register now forms.office.com/e/zBp9CNBKgb Dr Suja Somanadhan Prof AJ McKnight 22Q11 Ireland @IrelandSwan Rare Diseases Ireland RARE Ireland NIRDP

I'm excited to join experts by experience at the RAiN Symposium IT Tralee (Now MTU) RAiN is committed to advancing and promoting #PPIE #EDIfocused rare disease research across Ireland. #RareDiseases #RAiN #Research #Healthcare #Needfocused #solutionbased #PLWRD Prof AJ McKnight UCD Research

‼️ Rare Ireland Launches new website ‼️ All of the team at Rare Ireland are delighted to announce our updated website is now live. Remember 1 in 17 individuals in Ireland, will be affected by a rare disease in their lifetime. Visit rareireland.ie

New publication alert! The use of art as a creative research method to understand psychosocial care needs for #children #rarediseases #SAMPI project funded by CHI at Temple Street More information available via: doi.org/10.1177/263300… RARE Ireland Rare Diseases Ireland RAiN

10 weeks to go! Speakers include rare disease patients, family members, advocates and professionals working on the field of rare diseases. Register now on eventcreate.com/e/rareireland2… or rareireland.ie Rare Diseases Ireland 22Q11 Ireland Dr Suja Somanadhan RAiN Joan Johnston

Rare Ireland annual conference. Speakers include Anne Lawlor from 22Q11 Ireland and care Co ordinator Wesley Mulchay who will highlight the success of the 22q clinic and the need for co ordination for #PLWRD register here for tickets eventcreate.com/e/rareireland2…

Rare Ireland’s 3rd annual conference, October 18th 2024 in the Shamrock Lodge Hotel in Athlone. We will feature a series of speakers including Roisin who is living with NF1. eventcreate.com/e/rareireland2… 22Q11 Ireland NFIreland Rare Diseases Ireland Avril Daly 💚 Sally Ann Lynch Anand Saggar

Our sibling speakers are always so impactful. At this year’s conference Shauna will speak about life as a rare sibling and helping to care for her brother Daniel who is living Soto Syndrome. To register follow this link eventcreate.com/e/rareireland2…