Another report highlighting the inequalities in the health system for the rare community! Against the backdrop of the new RD action plan does this one have stronger legs? Let's hope so...🙏🙏🙏
#fairforrareni #rareaware #1in17 #rareni
NIRDP
@RobinSwannMoH
Genetic Alliance UK

Great to support #RateDiseaseDay2018 & present at MSc #Genetic & #Genomic Counselling Tutorials today raising awareness #tuberoussclerosis & repeating again tomorrow! #SpecialRarePowers #Pinksocks #IAMTSC #ShowYourRare #1in17 Tuberous Sclerosis Association Rare Disease UK Genetic Alliance UK Wales Gene Park

Delighted to attend #pccconnect Patient and Client Council (PCC) event and wonderful to make connections. #StrongerTogether #RareAwareness #1in17

Great to hear Maolíosa Mc Hugh-Sinn Féin and Padraig O'Sullivan TD politicians North and South talk this evening about partnership to reduce Health Inequalities of the rare disease community at the Rare Disease Forum

IPPOSI Rare Diseases Ireland Health Research Charities Ireland - HRCI Cystic Fibrosis Ireland

What a successful #RareDiseaseDay we have had. Thank you to everyone that attended the Westminster reception yesterday - despite the snow! Today we are reflecting on the key messages we wanted to share. You can find them in our 2018 #RareDiseaseDay poster #1in17

Expand it to #ForgottenFamiliesOfIreland It certainly feels that way & we’ve been saying it for decades. Those in the #RareCommunity know this all too well, battling for the basics & all the while there is little awareness, support, services, accommodations, future planning etc

Find out with us what lurks in the deepest, darkest depths of the newest Golf With Your Friends course with us now, over on the Team17 Twitch channel! 👻

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Today is #RareDiseaseDay2018 My son Brody has an #undiagnosed genetic syndrome so rare that doctors are still searching for a diagnosis. We are on the 100K genomes & DDD study hoping one day for an answer SWAN UK (syndromes without a name) Rare Disease UK Genetic Alliance UK #1in17

On my way to Westminster to attend the Rare Disease Day reception. Haven’t been to the English one before - exciting! #RareDisease #rare diseaseday2018 #pcd #bronchiectasis #lungs #rare #1in17 #geneticallianceuk #RareDisease UK

Wednesday 28th February 2018 World Awareness Day for Rare Diseases and Conditions. I.e. ZEBRA DAY #RareDiseaseDay2018 #1in17 #rare

#ShowYourRare #ShowYouCare

EDSWellness PURITYhealing
FOMOCreator (she/her) @LaraBloomEDS Rare Disease Day Rare Disease UK

*SHARE youtu.be/CLs5Q1XUiUg

#1in17 people will be affected by a #raredisease at some point in their lives. Chances are you’ll know someone affected. #RareDiseaseDay

#1in17 people will be affected by a rare disease in their lifetime. #RareDiseaseDay Find out more: thndr.me/lVLUBt

Gloucestershire Hospitals NHS Foundation Trust Today is Rare Diseases Day, we are a family of zebras for whom the NHS is fabulous. One of us is even #undiagnosed (ultra rare zebra). Pls help raise awareness #1in17 Rare Disease UK swanuk

My baby daughter is a #1in17 still awaiting formal diagnosis but suspected Pulmonary Lymphangectasia, so difficult when there is such little info as so rare. Please help raise awareness on #RareDiseaseDay twitter.com/swan_uk/status…

#Disability and (individually rare collectively common) #RareDiseases #1in17 are inextricably linked.

Hey y'all. I'm doing a twitter takeover today for SWAN UK (syndromes without a name) . I'm on from 4pm till 5 if anyone's about, talking about Nenna and stuff :) #1in17 #RareDiseaseDay

Today is Rare Disease UK #RareDiseaseDay the irony is not lost, i am on my way to Great Ormond Street Hospital for training for cortisol insufficiency. Rowan is one of the #1in17 who will be affected by a rare disease in their lifetime. #Hypopituitarism The Pituitary Foundation SWAN UK (syndromes without a name) Genetic Alliance UK

#1in17 people will be affected by a rare disease in their lifetime. #RareDiseaseDay Find out more: thndr.me/lVLUBt

Delighted to be hearing from Lucy, M4RD CEO and other speakers at the Unusual Suspects event - helping medical professionals to be more #rareaware
Medics4RareDiseases RoySocMed NIRDP
#daretothinkrare #1in17 #MentalHealthAwareness #makeourinvisiblevisible

Department of Health NIRDP A truly joyful moment for the RD Community in NI & although #ittakesavillage a profound thanks to @RobinSwannMoH and our Chair Rhoda Walker & the team of NIRDP and the #1in17 living with RD who have made this achievement (and the actions that will flow from it) happen #rareni

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Another successful #RareDisease Day Raising Awareness around the world... great to see so many #RareDisease organisations at the Westminster yesterday, thank you Rare Disease UK #1in17 👏👏 twitter.com/rarediseaseuk/…

Rare disease report ‘A Fairer Future’ was launched this eve and #EhlersDanlosSyndromes are mentioned! Most EDS types are rare but recommendations apply to hEDS & HSD too. Proud to have been involved. Ehlers-Danlos Support UK Public Policy Projects Medics4RareDiseases

Individually rare collectively common #RareDiseases
#1in17

I love someone rare. He has a syndrome so rare we may never find out what it is. But isn't rare beautiful? #raredisease day #raredisease #genomes100k #undiagnosed #1in17

The majority of children with rare diseases grow up into adults with rare diseases.
Individually rare, collectively common #RareDiseases #1in17
Children's Health Ireland RCSI Research and Innovation HRB Irish Network for Children's Clinical Trials.

Are you living with or caring for someone with a rare disease? The HSE National Rare Diseases Office is conducting a survey to evaluate psychological supports for people living with rare diseases in Ireland. orphanet.site/ireland
PLEASE take 15 minutes to provide your feedback.

#1in17 for me is possibly 2 overlapping rare diseases Urticarial Vasculitis (much more than itchy skin) & normal C1 Hereditary Angioedema. 10 years plus since an initial diagnosis of idiopathic angioedema and it is always changing #progression #RareDiseaseDay2018 John@VasculitisUK #MBE & Retired #NHS Dentist 💙 HAE UK

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