🌟 Did you know? ~8000 rare diseases, with 70% affecting children. Passionate about Paediatric #Cancer , #CysticFibrosis , #PKU , #SickleCell #chromosal disorders, etc. Let's unite! Whether you're ECR or experienced 'Dont miss it! #interdiciplinary #Research RAiN

March 2011 Alanna was diagnosed with #koolendeVriesSyndrome , before this I had no idea of #RareDiseases . Since her diagnosis has taken us on the most incredible journey #RareIsProud #RareIsMany #IAmNumber17 KdVS Foundation Sally Ann Lynch

#IAmNumber17

Stay tuned for more information about a rare disease campaign we are involved in, launching tomorrow, February 7th.

Did you know 1 in 17 Irish people are living with a rare disease? #IAmNumber17 Rare Diseases Ireland 22Q11 Ireland KasiaGoljanekWhysall Les martin Anne Micks

Really looking forward to this event, thank you RAiN for encouraging our children and teenagers to speak out, have their voices heard and advocate for themselves and their rare siblings. #creatingastrongerfuture #rarecommunity #futureadvocates #StrongerTogether

Thank you Dr Suja Somanadhan and Melissa Kinch for working with our young people and encouraging them to advocate for #RareDiseases . Shannon and Darragh are really looking forward to their next CRAG meeting RAiN #FutureAdvocates #RareDiseaseCommunity

International day of people with disabilities. The UNCRPD identifies 26 important rights that impact the lives of persons with disabilities. Today, we call for the implementation of the UNCRPD to adopt the rights of people living with disabilities in Ireland.

I’m so honoured to be awarded Westmeath Family carer of the year today. Thank you Family Carers Ireland for all you do to acknowledge and support family carers.

Thank you so much Louise O'Keeffe for the lovely nomination 💗

23 years ago today our rare journey began. There have been lots of ups and downs but I wouldn’t change a thing about our amazing young lady. Our special day was topped off with excellent junior cert results. Double celebrations for my girls today #RareCommunity #StrongerTogether

We remember the babies born sleeping. Those we carried but never held. Those we held but could not take home. Those who came home, but could not stay. #pregnancyLoss #StillBirthAwareness #SayTheirNames

Our Rare children and adults jump through obstacles every single day. We want to show them what we will do for them and skydive from 10,000 feet in support of our rare loved ones. If you know anyone brave enough to join us please share the details below.

Only 7 weeks to go until our Rare Ireland conference. We have a great lineup of speakers and exhibits. Get your free tickets on eventbrite.com/e/rare-ireland…

Koolen de Vries Syndrome awareness day. Alanna was the second person diagnosed with kdvs in Ireland. She has brightened our lives and the lives of everyone who knows her. Our ray of sunshine who is never without a smile #RareIsBeautiful #kdvs RARE Ireland KdVS Foundation

We are very excited to announce our conference is going ahead again this year #SaveTheDate , registration opens next week. Stand by to hear our line of of guest speakers!

Shannon Egan, age 15 & Darragh Egan, 12  from Athlone help to care for their 22 year old sister Alanna who is living with a rare chromosome disorder called Koolen-de Vries Syndrome. '“young carers need to be recognised too, they live completely different lives to their friends.'

Our Rare Ireland conference and information day is being held on September 22nd in Sheraton Athlone. We have 8 information stands remaining, if you work with a support organisation and would like to take a stand to offer your information to parents/carers please get in touch

We would like to invite you to register for the 
RAiN webinar on Monday, April 3rd, from 12.00 -2 pm

“DATA SHARING & INTEGRATION OF SERVICES FOR RARE DISEASES”

Chair: Dr Avril Kennan, CEO of Health Research Charities Ireland (HRCI)

All Ireland Rare Dis…lnkd.in/eN3kGntP

Next month marks 12 years on our rare journey, it’s a life I never imagined but I’m so blessed to have met some of Irelands strongest, most amazing mothers. Happy Mother’s Day to all you #SuperMums hope you all had a lovely, relaxing day 💞

Absolutely heartbreaking 💔

Must read - Importance of #rareresearch & expansion of #newbornscreening to meet the unmet needs of the rare community. As a community we need healthcare equity #Act4Rare

@Lesmart11659095 Alan Finglas

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