Rare Disease Clinical Trial Network, Ireland Rachel Crowley Rare Diseases Ireland Houses of the Oireachtas - Tithe an Oireachtais Stephen Donnelly UCD Medicine St Vincent's University Hospital (SVUH) EURORDIS-Rare Diseases Europe United voice from #RareFamilies advocates & clinicians calling for the government to act on the promises made in the programme for government.

Time to #EndTheWait we need to see support & action for #GeneticServices in 🇮🇪

#HelloYellow is coming 10-Oct-22. Are you ready? Minion, banana, custard, lemon, canary, Norwich City shirt (😵‍💫)? What will you wear?
YoungMinds #EndTheWait

Politicians should be aware of the current state of young people's mental health and how inaction is impacting their lives. We shouldn’t have to drive around Westminster in a van to remind them. #EndTheWait

Ever wait for something that you weren’t sure you were going to get the chance to have? A 2% chance is all I had and I waited 766 days until that 2% became just a number. I will always be thankful for my heart donor and their family. #endthewait #DonateLife

At parliament today with
YoungMinds
Activists talking to MPsabout how we can #EndTheWait and #FundTheHubs . #MentalHealth

Thank you to some of the fab representatives from Sandwell services for supporting our mission to #endthewait #mentalhealth #fundthehubs
YoungMinds
Caroline Hope
Mark Russell 🇺🇦 (he/him)
The Kaleidoscope Plus Group
Rishi Sunak
21st Century Child
Steve Barclay

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#EndTheWait 💜

Will you ask Jeremy Hunt to introduce waiting time targets for adults with eating disorders Theresa May? #earlyintervention for #eatingdisorders saves lives and money. Help @BeatED to #endthewait

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Nothing can dampen our spirits when it comes to keeping the #GetRareAware conversation going!

Let's continue to raise awareness of rare disease diagnostic journeys, and fight for better genetic services in Ireland!🧬

Stephen Donnelly Leo Varadkar #RareDiseases #EndTheWait

Launch of #GetRareAware campaign & publication of #EndTheWait research report highlighting opportunities to reduce 2 yr #WaitingList for genetic services Children's Health Ireland Dr Colm Henry, CCO HSE Ireland
Joined by Houses of the Oireachtas - Tithe an Oireachtais TDs John Lahart TD Pádraig O'Sullivan TD Ivana Bacik Neasa Hourigan TD
rdi.ie/endingthewait/

I’m just one of over 6000people #WaitingForTheCall Please talk about #organdonation NHS Organ Donation💗🫀🫁 #EndTheWait for us julie bartlett Lyndsey Fitzpatrick 🫀♻️🔜💝 Donate4Dáithí @thalias_heart Naomi 🇬🇧🇹🇹 💗🅾️➖ @OurRohan Share Your Wishes KATIE MAGNET ;💞🧲 London Organ Donation Team 💗 Live Life Give Life Transplant Toys HeartsThatMatterUk

Did you know we have our own monthly radio show on Black Country Xtra where we talk about all things mental health? On this months show we chat to Kooth plc about how to access support this holiday and spotlight YoungMinds latest campaign #endthewait 💛

Heading to the Oireachtas today to support this campaign & represent the many other families that are still going through the #DiagnosticOdyssey like we did.

Confused, stressed, isolated & worried for the future. 2yrs + is not a reasonable wait

#EndTheWait #SupportRare

4 tactics government leaders can use to create unified, customer-centric communications campaigns and experiences. Tactic number 1: Know who to reach and what drives them. Learn more Deloitte. #ad bit.ly/43ezvLP

#WaitingForTheCall for 1227days that’s too long Lyndsey Fitzpatrick 🫀♻️🔜💝 I’ve been waiting 1151 days & 367 of them in hospital on the Urgent list julie bartlett Please #EndTheWait talk about #organdonation NHS Organ Donation💗🫀🫁 KATIE MAGNET ;💞🧲 Share Your Wishes Live Life Give Life 🏏England and Wales Transplant Cricket🏏 @thalias_heart NHS Blood+Transplant

#endthewait so proud of you three 💛

HDAI are delighted to be part of the #GetRareAware campaign led by Rare Diseases Ireland . Calling to improve access to genetic services @ CHI_Ireland Dr Colm Henry, CCO HSE Ireland .
Thank you Deputies John Lahart TD Pádraig O'Sullivan TD and Ivana Bacik for your support to #EndTheWait

Really encouraging event to hear the experiences of families, advocates & clinicians on the urgent action needed to #EndTheWait for routine genetic appointments.

We need our elected TDs to #GetRareAware & act to ease the challenges the #RareDiseaseCommunity face

CHI at Crumlin

We hear this in every single one of our participation groups. Our young people are waiting far too long to access the help they need. #EndTheWait

#SurreyYouthVoice

There are currently around 6,000 people in the UK waiting for an organ transplant.

The law on organ donation is changing to help save and improve more lives, but you still have a choice whether to be an organ donor or not when you die.

#PassItOn NHS Organ Donation💗🫀🫁

Thank you Murray Hall Community Trust Kooth plc Barnardo’s C.I.T Academies for joining our campaign to support YoungMinds #endthewait

Today we bring #GetRareAware to the Oireachtas Houses of the Oireachtas - Tithe an Oireachtais
We will meet with #TDs & #Senators & ask them to Take Action - demand Stephen Donnelly provides promised support to Children's Health Ireland genetic services.
You too can Take Action. Join the campaign getrareaware.ie

#His first holiday abroad ❤️🙏🏼 #postlivertransplant #IKA #hope #lifeaftertransplant #transplant #autoimmunedisease #endthewait #organdonation #organdonor #organrecipient

I’ve been waiting 1,227 Days for a heart transplant 💔♻️🔜💝 Share Your Wishes Live Life Give Life BHF

Listen to Dr. Amy Feldman from Children's Hospital Colorado explain why living donation is imperative for the pediatric #liver #transplant #community 👏🏻💚♻️.

Thank you Dr. Feldman!

#donatelifemonth #livingdonor #shareyourspare #endthewait #biliaryatresia #bare #BA

We've heard enough promises from politicians.

While they’re deciding who should be in charge, record numbers of young people are being referred to mental health services. And hundreds of thousands of young people are waiting for the support they need.

It’s time to #EndTheWait