Rare Disease Clinical Trial Network, Ireland @rare_trial
HRB-funded clinical trial network aiming to increase the quantity and quality of rare disease clinical trials in Ireland, keeping the patient voice at our core UCD, Dublin Ireland Joined February 2023-
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Over 6,000 people from 50 countries responded to our latest Rare Barometer survey conducted with the @Screen4Care project. Join our webinar to find out what they said and how you can make sure that their voices are heard: 📅 30 April 2024 ⏰ 2pm CEST 👉 go.eurordis.org/XAVrIz
🎙️Calling researchers to join the conversation about #RareDisease on the Island of Ireland! Not too late to submit your abstract for the @RAiNAllIreland #ECR forum @QUBelfast @cpcconf2024 @Melissa_Kinch_ @a_j_mcknight @22Q11_Ireland @rare_trial @rareireland @RareDiseasesIE
🎙️Calling researchers to join the conversation about #RareDisease on the Island of Ireland! Not too late to submit your abstract for the @RAiNAllIreland #ECR forum @QUBelfast @cpcconf2024 @Melissa_Kinch_ @a_j_mcknight @22Q11_Ireland @rare_trial @rareireland @RareDiseasesIE
🎉 Launch of the new ERN-EYE general flyer! 🚀 You will find all information about ERN-EYE members, actions and contact. 👀 Take a look now! ➡️ ern-eye.eu/wp-content/upl…
Hot off the press, here's the April issue of the PPI Ignite Network Newsletter, bringing you all things PPI. Read the full Newsletter here: tinyurl.com/ycx3nchz And don't forget to subscribe to stay up to date! ppinetwork.ie/get-involved/
EXCELLENT VISUAL that highlights how #PPI can be integrated into the research cycle by @NIHRresearch Diagram outlining the research process and how patient and public involvement can be embedded in it @NIHRinvolvement @NIHRtakepart @RAiNAllIreland @rare_trial @RareDiseasesIE
Want to know more about Clinical Trials? Tune in to learn about the Online Graduate Cert in Clinical Trials at UCD!
Want to know more about Clinical Trials? Tune in to learn about the Online Graduate Cert in Clinical Trials at UCD!
📬 Did you receive our newsletter? 👀 See what's happening in Irish #RareDisease research! Sign up to receive regular updates directly to your inbox, don't miss out! ➡️eepurl.us8.list-manage.com/subscribe?u=aa… #RareDiseaseCommunity #ClinicalTrials
📣Register to the ERKNet/EURORDI webinar on Patient Involvement in Guidelines! 🗓 22 April 17:30 - 18:15 CET The presentation will focus on how patients can best contribute in the development phase and how clinicians can encourage patient involvement. bit.ly/3TSB8Lx
Exciting update for #raredisease enthusiasts! 🌟Registration for the Final #EJPRD Conference has been extended to 22 May 2024! Join online 27-28 May 2024 for engaging sessions on RD research. Check out the agenda and secure your spot today! ℹ️ ejprarediseases.org/ejp-rd-final-c…
Watch our new interview featuring Johan De Graaf, a Patient Expert. Johan highlights the important role of patients in research, emphasizing significant changes in the past years. ▶️ Watch the full video here: youtube.com/watch?v=sADAC3…
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 eventbrite.ie/e/get-rare-awa…
Delighted to join @RareDiseasesIE at the launch of the #Getrareaware campaign launch at Leinster House 🙌 @DystoniaIreland
📢 Spotlight: Daniel Mikula, Project Manager for the Rare Disease Research Catalyst Consortium (RDCat)! ✨ He supports Irish-based healthcare professionals, researchers and patients working in collaboration to build rare disease excellence and increase rare disease research.
Just one more day to go for early-bird prices for @RIWC24. Don't miss out! 🔗fightingblindness.ie/register-for-t… @Retina_Int | @fight_blindness
Just one more day to go for early-bird prices for @RIWC24. Don't miss out! 🔗fightingblindness.ie/register-for-t… @Retina_Int | @fight_blindness
Do you want to learn more about Health Technology Assessment (HTA)? 🙋 EUCAPA offers three training programmes designed to enable people living with rare diseases and their representatives to fully participate in HTAs! ➡️ Learn more: eucapa.eu
Today we celebrate Health and Social Care Professionals Day #HSCPDay2024 and extend our thanks to the 21,000 HSCPs delivering care to patients in Ireland. A special "Thank you" from @ILFA_Ireland to all those caring for lung fibrosis patients. You are valued and your care counts!
Beatrice Nolan @BeatriceNolan16
39 Followers 159 Following
Blair Torrey @BlairTorre68697
54 Followers 5K Following
骚妻淫穴 @saoqiyinxue
1 Followers 241 Following
Niall Carty @NKCmedical
454 Followers 1K Following Lecturer in Paramedic Sciences, Ulster University. HCPC Paramedic. PHECC Advanced Paramedic.
Una Martin @UnaMartin
101 Followers 311 Following Clinical Nurse Specialist Paediatric Neurodisbility RCN RNID, Wife, Mother of two fun loving boys
Interstitial Lung Dis.. @ILDinfo
119 Followers 195 Following Videos, Podcast and Posts about Pulmonary Fibrosis (lung scarring) and related conditions in an easy-to-understand format. By @scstanel #InterstitialLungDisease
zoe pharmaron @ZoePharmaron
2 Followers 62 Following
Michele Mcgath @mcga_michel
71 Followers 5K Following
Mari Houston @HoustoMa
48 Followers 5K Following
Maria @demars_maria57
441 Followers 3K Following
Canadian Association .. @PorphyriaCanada
97 Followers 608 Following Providing information and support to Canadians with porphyria and their families since 2014.
Maj Mel Mann, Ret., M.. @MelDMann
502K Followers 260K Following WORLD’S LONGEST LIVING GLEEVEC & Tyrosine Kinase Inhibitor TKI Survivor, 29 Yr #CML Survivor, Army Ret, CONNECT IF YOU’RE CONNECTED TO CANCER OR CLINICAL TRIALS
Pituitary Ireland @pituitaryirela1
250 Followers 223 Following Pituitary Ireland is a Non Profit patient Support Group established to offer support & info to people living with rare diseases of the Pituitary Gland.
MU Centre for Mental .. @CMHCR_maynooth
925 Followers 2K Following CMHCR: An interdisciplinary research centre at the cutting edge of applied & collaborative mental health and community based research, MU Psychology Dept/MUSSI
Carmen Henderson @CarmenHend4576
14 Followers 709 Following
Peer Med Zebra | Rare.. @peermedzebra
73 Followers 295 Following An initiative of @PeerMedicalFDN advocating for intersectionality in care for patients with Rare Diseases so that no one is left behind!
EPNS @EPNSnews
3K Followers 3K Following European Paediatric Neurology Society (EPNS): a society for physicians, health professionals, scientists and students with an interest in Child Neurology.
Charlsie Rous @CharlsieR81947
81 Followers 5K Following
Joe Condon @Condon_joe
53 Followers 280 Following
Trinity Kidneys @THKC1
1K Followers 854 Following Academic Nephrology unit in @tcddublin: focused on improving kidney health
Casimira Jauregui @CasimiraJ19886
66 Followers 5K Following
RareQoL @RareQoL
322 Followers 423 Following Raising Voices-Better Choices A Not-for-Profit & Consultancy. Improving Quality of Life for diverse rare disease communities & under-represented groups.
Remember The Girls @remember_girls
2K Followers 838 Following Nonprofit organization aiming to break the stigma facing females impacted by X-linked conditions. #NotJustCarriers
Rare Disease Research.. @RD__RP
172 Followers 97 Following Rare Disease Research Partners support research and access to treatment for people living with rare conditions. Serving rare disease communities.
TSC Alliance @tscalliance
3K Followers 1K Following The TSC Alliance is a source of hope and support for people with tuberous sclerosis complex so they can live their fullest lives. #HopeNoMatterHowComplex
National Office of Cl.. @noca_irl
7K Followers 2K Following Working to achieve excellent healthcare for Ireland, shaped by reliable data. RT is not an endorsement. #improveoutcomes
AKU Society @AKUSociety
2K Followers 1K Following Alkaptonuria (AKU) or Black Bone Disease, causes severe osteoarthritis, heart disease & other serious health problems. Help us find a cure.
JARDIN_Joint-Action @jardin_EU_JA
89 Followers 131 Following JARDIN is created to improve the accessibility of the ERNs for people living with rare diseases or complex conditions in EU member states.
The National Maternit.. @_TheNMH
5K Followers 2K Following The NMH, which was established in 1894 is a centre of excellence, the maternity hospital of choice for women & a leader in maternal, neonatal & women's health.
Dementia Research Net.. @drnire
2K Followers 919 Following DRNI supports & facilitates collaborative interdisciplinary research & policy development in dementia & neurodegeneration in Ireland. RT ≠ endorsement.
Autoinflammatory All @AAlliance_SAID
2K Followers 836 Following The Autoinflammatory Alliance (formerly NOMID Alliance) is a 501(c)(3) non-profit improving awareness, care & treatment for autoinflammatory diseases.
Steve Petherbridge�.. @sjpetherbridge
587 Followers 1K Following Dir. Dystonia Ire. DBS surgery @uclh @QSNeurosurgery Queen Sq 2016 Medtronic Neurostimulator @mdtneurosurgery @DystoniaIreland Admin; @AgeFriendlyDCU Student
Nikki Dunne @dunne_nikki
239 Followers 824 Following Research Manager, Family Carers Ireland. Interested in #care, #labour, #family, #gender #intersectionality All views my own
Sjögren's Ireland @SjogrensIrl
497 Followers 283 Following (SHOW-grins). Voluntary organisation advocating for those living with Sjogren's in Ireland. Advocacy, education, community. Contact: [email protected]
MCDS-Therapy @MCDS_Therapy
745 Followers 2K Following An @EU_H2020 funded clinical trial for the treatment of #RareDisease MCDS. Any related tweets reflect only the views of the project owner.
Leanne Hays @LeanneM_Hays
31 Followers 149 Following Programme Manager, Irish Critical Care-Clinical Trials Network. All things trials, PPI and biosampling.
Shaun Treweek @shauntreweek
4K Followers 2K Following Professor of Health Services Research, Health Services Research Unit, University of Aberdeen; trying to make trials more efficient https://t.co/xKksiiVZ1I
Susana Mouga @susanamouga
85 Followers 206 Following Psychologist and researcher @Cibit_UC, @UnivdeCoimbra. Bridging the gap between #research and #clinic of #autism
Helena424 @Helena424496412
3 Followers 52 Following
faye @fayemurphy01
738 Followers 513 Following Research Assistant, @ucd_conway | Molecular Medicine Graduate @tcddublin | Co-founder, Evergreen @evergreentcd | sí/í 👩🏻🔬🔬
Christy Ryan @Christy41473797
3 Followers 19 Following
PRiCAN (Primary Care .. @PRiCAN_Research
181 Followers 522 Following Twitter account of the PRiCAN Research Group (based at @RCSI_GP) #EarlyCancerDetection #RiskPrediction #LungCancerScreening
Paula Brooks @pc_byrne
5 Followers 42 Following
Mari Ozaki @MariOzaki14
111 Followers 155 Following Scientist🔬and mama of 2 IRC Starting Laureate Awardee Examining the effects of aging, short telomeres and sex hormones in #IPF using #iPSC models @RCSI_Irl
Vinnie Rolfness @vinnierolfness
31 Followers 135 Following High School American Sign Language teacher in Oregon.
Simone Lepage @SLepageFarrell
174 Followers 450 Following PhD candidate. Midwife. Nurse. Scientist. Mama of 2. Learning in perpetuity.
Dra Alejandra Chavez .. @ALECH97
810 Followers 2K Following Medicina Interna - Reumatología - Alta Especialidad en Vasculitis Sistémicas Primarias
Public Engagement MHL.. @qubengagemhls_d
949 Followers 770 Following ‘Show and Share’ – supporting researchers within the Faculty of Medicine, Health and Life Science to engage the public with their research.
Saudi Doctors Society.. @saudi_drs_ir
869 Followers 41 Following Under Saudi Cultural Bureau supervision to support Saudi doctors and medical students who are training in Ireland. تحت إشراف الملحقية الثقافية السعودية بايرلندا
Interstitial Lung Dis.. @ILDinfo
119 Followers 195 Following Videos, Podcast and Posts about Pulmonary Fibrosis (lung scarring) and related conditions in an easy-to-understand format. By @scstanel #InterstitialLungDisease
MU Centre for Mental .. @CMHCR_maynooth
925 Followers 2K Following CMHCR: An interdisciplinary research centre at the cutting edge of applied & collaborative mental health and community based research, MU Psychology Dept/MUSSI
nature @Nature
2.6M Followers 4K Following Research, News, and Commentary from Nature, the international journal of science. For daily science news, get Nature Briefing: https://t.co/wGmQlQ8a4D
NEJM @NEJM
942K Followers 436 Following The New England Journal of Medicine is the world’s leading medical journal and website.
The Lancet @TheLancet
747K Followers 471 Following Welcome to The Lancet, one of the world’s leading medical journals, published weekly since 1823.
The Journal of Bone a.. @The_JBMR
1K Followers 153 Following The Journal of Bone and Mineral Research is the flagship peer-reviewed publication of the @ASBMR. Editor-in-Chief: Rajesh Thakker, MD, FRCP, FRS
OrphanetJournal at BM.. @ojrarediseases
2K Followers 166 Following Orphanet Journal of Rare Diseases is fully open access & published by @BioMedCentral (part of @SpringerNature), on behalf of @INSERM.
NIH @NIH
1.7M Followers 323 Following Official account of the National Institutes of Health. NIH...Turning Discovery Into Health®. Privacy Policy: https://t.co/wOGwZ3huRk Engagement ≠ endorsement
Inserm @Inserm
159K Followers 377 Following Institut national de la santé et de la recherche médicale. La science pour la santé.
Professor Philip Nola.. @PhilipNolan_SFI
30K Followers 301 Following Director-General @scienceirel | Scientist, teacher, passionately interested in many things, and a cyclist | [email protected] | Personal account
RareQoL @RareQoL
322 Followers 423 Following Raising Voices-Better Choices A Not-for-Profit & Consultancy. Improving Quality of Life for diverse rare disease communities & under-represented groups.
NCATS @ncats_nih_gov
16K Followers 702 Following Official account of @NIH's National Center for Advancing Translational Sciences. Privacy Policy: https://t.co/f5qzfKqqaR engagement ≠ endorsement
Pulmonary Fibrosis Fo.. @PFFORG
7K Followers 1K Following We imagine a world without pulmonary fibrosis. https://t.co/e5cmq67fNV
TSC Alliance @tscalliance
3K Followers 1K Following The TSC Alliance is a source of hope and support for people with tuberous sclerosis complex so they can live their fullest lives. #HopeNoMatterHowComplex
CHEST @accpchest
45K Followers 5K Following Advancing best patient outcomes in chest medicine. Official account of the American College of Chest Physicians® #CHEST2024 @journal_CHEST
ERS publications @ERSpublications
30K Followers 308 Following European Respiratory Journal, European Respiratory Review, ERJ Open Research, Breathe, the ERS Monograph and ERS Handbooks, and European Lung White Book
British Thoracic Soci.. @BTSrespiratory
24K Followers 455 Following The British Thoracic Society is the largest respiratory membership body in the UK. We work towards better lung health for all. Our tweets are not endorsements.
Lora Ruth Wogu @LoraRuthW
539 Followers 485 Following AHP|Patient Advocate|DEI in Quality Patient care|Global,Disability & Migrant Health Advocate |passion for Sickle Cell| Special needs mom| Own Views 💯
Ciara Micks @CiaraMicks
88 Followers 334 Following I’m 22, I live with Ehlers Danlos Syndrome. My aim is to share info & spread awareness about this not so rare condition
Barth Syndrome @BarthSyndrome
413 Followers 100 Following Barth Syndrome Foundation - saving lives through education, advances in treatments, and finding a cure for Barth syndrome.
rareparenting @rareparenting
265 Followers 762 Following Online magazine for parents of children with #disabilities, #rarediseases and #specialneeds
17q12 Foundation @17q12Foundation
54 Followers 12 Following Creating a community for those affected by 17q12 syndromes while raising awareness and encouraging research. 
KdVS Foundation @KdVSFoundation
222 Followers 268 Following Koolen-de Vries Syndrome (KdVS) Foundation is a non-profit organization promoting awareness and raising funds for this genetic syndrome.
Stiff Person Syndrome.. @TheSPSRF
386 Followers 159 Following Finding a cure for Stiff Person Syndrome through RArE: Research, Awareness, and Education. #sps #TheSPSRF
United Porphyrias Ass.. @UnitedPorphAssc
152 Followers 298 Following The Future of Porphyria...Raising Awareness, Research and Therapies
KBG Foundation @KBGFdn
604 Followers 530 Following The KBG Foundation is a 501(c)(3) nonprofit, dedicated to providing support, assisting in research and advocating to raise awareness about KBG Syndrome.
NR2F1 Foundation @Nr2f1Foundation
68 Followers 87 Following Empowering families and individuals living with rare #NR2F1 mutations through education, awareness and research.
PA Rare Disease Advis.. @PARareDisease
786 Followers 638 Following To improve the quality of life for all those affected by rare diseases in Pennsylvania.
Project 8p @chromosome8p
543 Followers 393 Following Project 8p is a non profit committed to finding treatment with translational research, advocacy and data sharing for Chromosome 8p disorders.
Remember The Girls @remember_girls
2K Followers 838 Following Nonprofit organization aiming to break the stigma facing females impacted by X-linked conditions. #NotJustCarriers
Mental Health Europe @MentalHealthEur
21K Followers 3K Following Largest independent #mentalhealth NGO in Europe 🚀🇪🇺 | We stand up for #humanrights of people with mental ill-health, fight #stigma & advocate for better care
IPWSO @ipwso
634 Followers 465 Following International Prader-Willi Syndrome Organisation supporting PWS associations, caregivers, professionals, people with PWS and their families worldwide.
AKU Society @AKUSociety
2K Followers 1K Following Alkaptonuria (AKU) or Black Bone Disease, causes severe osteoarthritis, heart disease & other serious health problems. Help us find a cure.
Institute for Clinica.. @TrialsGalway
102 Followers 20 Following Transforming the clinical research landscape by creating a comprehensive end-to-end programme for clinical trials. #FutureTrials
General Practice Adva.. @GPANPIreland
697 Followers 488 Following A growing group of Advanced Nurse Practitioners in Primary Care
MRH Tullamore ANP Gro.. @AnpMrht
371 Followers 338 Following Advanced Nurse Practitioners working in a variety of specialities improving patient experiences and outcomes
irishthoracicsociety @irishthoracicS
2K Followers 440 Following Official twitter account of the Irish Thoracic Society 🫁
NF Patients United @NfPatients
219 Followers 94 Following Neurofibromatosis Patients United (NFPU) is the European Neurofibromatosis umbrella patient association
Atypical Truth @atypicaltruth1
14 Followers 29 Following Disabled mom of two rare heartthrobs. Researcher and podcaster. Amplifying the stories within my community, one conversation at a time.
UCD School of Nursing.. @ucdsnmhs
3K Followers 691 Following Ireland's leading nursing, midwifery & healthcare school providing undergraduate, graduate taught, research and Ph.D. opportunities. RT is not an endorsement.
National Office of Cl.. @noca_irl
7K Followers 2K Following Working to achieve excellent healthcare for Ireland, shaped by reliable data. RT is not an endorsement. #improveoutcomes
SETU_Research @SETU_Research
4K Followers 971 Following SETU is a research-led technological university, recognised for its distinctive, high quality centres of research.
START Competition @STARTSchools
807 Followers 2K Following START (Schools Teaching Awareness of Randomised Trials) National Competition - Led by @UniofGalway @hrbtmrn - Funded by @hrbIreland & @scienceirel
The Dublin Neurologic.. @dni_neurology
1K Followers 70 Following
The Genomic Data Infr.. @GDI_Ireland
41 Followers 41 Following 🇮🇪 The Irish node of the @GDI_EUproject 🇪🇺 Working toward a secure genomic data infrastructure to support research and clinical genetics In Ireland.
GlobalHealth.ie and E.. @ifglobalhealth
3K Followers 1K Following We are the network for global health workers in Ireland connecting those in the sector. We also host ESTHER Ireland & post here about North/South partnerships.
Patient Information F.. @PiFonline
4K Followers 2K Following PIF supports everyone involved in healthcare information & support. #HealthInformation #PatientInformation #HealthLiteracy #PIFTick https://t.co/KMgFQBI7vE
Dóchas @Dochasnetwork
11K Followers 2K Following Dóchas is the voice of Irish organisations working in #development #humanrights and #globaljustice Registered Charity Number: 20011680
Thank you @saudi_drs_ir and @rare_trial vital to ensure ongoing conversations about #raredisease #CPVT #SADS and look forward to future collaboration @UlsterUniSoNP @UlsterUniPhD @ERNGuardHeart @Irishheart_ie
This talk by @lorrainemac10 at the RDCTN coference was described at @saudi_drs_ir meeting today, specifically impact on family of, & member's decision to take on research into, rare disease. Well done Lorraine on ongoing international impact! #PPI #raredisease
Amazing work @lorrainemac10
This talk by @lorrainemac10 at the RDCTN coference was described at @saudi_drs_ir meeting today, specifically impact on family of, & member's decision to take on research into, rare disease. Well done Lorraine on ongoing international impact! #PPI #raredisease
Over 6,000 people from 50 countries responded to our latest Rare Barometer survey conducted with the @Screen4Care project. Join our webinar to find out what they said and how you can make sure that their voices are heard: 📅 30 April 2024 ⏰ 2pm CEST 👉 go.eurordis.org/XAVrIz
An amazing example of #PPI from a fabulous young lady living with severe ichthyosis, Lucy's wish 💫 An amazing example of how we can involve young people with lived experience to share their challenges and support communities to become #RareAware 🧬💫
Andy Dakin won the first artist's prize for Lucy's Wish which illustrates the visible difference and difficulties encountered through the eyes of a young girl with severe ichthyosis. Looking forward to @camraredisease in Nov. #raredisease #LATSS2024 @ISG_Charity @lifearc1
I was honoured to raise awareness of #Rarediseases @cpcconf2024 rare is many but common in our society >7000 conditions 70%among children 30%die before 5th Birthday due to life limiting nature. Together we are strong 💪 @Miriamcolleran2 @RAiNAllIreland
Great news for researchers! Abstract submission extended until 02nd of May 🎙️ come and join us @QUBelfast @a_j_mcknight Are you studying #Genetics #Biomolecular #Diagnostic #Careneeds #Services @cpcconf2024 #RareDiseases @RAiNAllIreland @rare_trial @RareDiseasesIE @rareireland
It's not too late to submit an abstract to our ECR! Due to high demand, we have extended the deadline for submission 🥳 A great opportunity to network with #RareDisease peers 💫 Submit an abstract👇 docs.google.com/forms/d/1qbFmJ…
Come and join this free online webinar focused on co-ordination of care with a focus on #RareDiseases great line of speakers @eurordis @GeneticAll_UK @22Q11_Ireland Great learning opportunity @cpcconf2024 @rare_trial @RareDiseasesIE @rareireland Don’t forget to register 😉
✨Registration for our webinar on Coordination of Care for #RareDisease is now OPEN! 🥳 Register below👇🧬 Stay tuned to find out about our exciting line-up of speakers 🤫🤫 @eurordis @GeneticAll_UK @22Q11_Ireland Register here: ucd-ie.zoom.us/webinar/regist… ✨
Prof Loran Fraser @lornafraser10 @KingsCollegeLon is highlighting the paediatric palliative care services and diagnostic group in the #UK @cpcconf2024 @rare_trial @RareDiseasesIE @RAiNAllIreland @UCD_Research
🎙️Calling researchers to join the conversation about #RareDisease on the Island of Ireland! Not too late to submit your abstract for the @RAiNAllIreland #ECR forum @QUBelfast @cpcconf2024 @Melissa_Kinch_ @a_j_mcknight @22Q11_Ireland @rare_trial @rareireland @RareDiseasesIE
📢Calling all #RareDisease Researchers📢 ⏰A reminder that we are hosting our first ECR forum on May 10th @QUBelfast. We have lots of exciting opportunities to share your research, including a very exciting 3-minute challenge 🗣️ Submit an abstract👇 docs.google.com/forms/d/1qbFmJ…
🎉 Launch of the new ERN-EYE general flyer! 🚀 You will find all information about ERN-EYE members, actions and contact. 👀 Take a look now! ➡️ ern-eye.eu/wp-content/upl…
Hot off the press, here's the April issue of the PPI Ignite Network Newsletter, bringing you all things PPI. Read the full Newsletter here: tinyurl.com/ycx3nchz And don't forget to subscribe to stay up to date! ppinetwork.ie/get-involved/
📢Calling all #RareDisease Researchers📢 ⏰A reminder that we are hosting our first ECR forum on May 10th @QUBelfast. We have lots of exciting opportunities to share your research, including a very exciting 3-minute challenge 🗣️ Submit an abstract👇 docs.google.com/forms/d/1qbFmJ…
Thanks very much to Yvonne, Nora W, Ruth and Nora M for presenting on the @ENSPIRED_IRE project today. The insights and expertise shared during the discussion were invaluable! A superb end to the population health seminar series ⭐️⭐️⭐️⭐️⭐️
Meet the first of our fantastic #CareCoordination webinar speakers on Thursday 23rd May! 💫 Senior research fellow Dr. @HollyWalton15 @ucl and Research Director, Dr. Amy Hunter @GeneticAll_UK, who will share findings from the Coordinated Care of Rare Diseases (CONCORD study).
Excited to share insights on Engaging Effectively: Tips for Researchers to Foster Meaningful Public-Patient Involvement & Engagement in Research! It's crucial to bridge the gap between academia & the community for impactful outcomes @IFNA #ResearchEngagement #PPI🌟🔬
EXCELLENT VISUAL that highlights how #PPI can be integrated into the research cycle by @NIHRresearch Diagram outlining the research process and how patient and public involvement can be embedded in it @NIHRinvolvement @NIHRtakepart @RAiNAllIreland @rare_trial @RareDiseasesIE
📣Register to the ERKNet/EURORDI webinar on Patient Involvement in Guidelines! 🗓 22 April 17:30 - 18:15 CET The presentation will focus on how patients can best contribute in the development phase and how clinicians can encourage patient involvement. bit.ly/3TSB8Lx
Exciting update for #raredisease enthusiasts! 🌟Registration for the Final #EJPRD Conference has been extended to 22 May 2024! Join online 27-28 May 2024 for engaging sessions on RD research. Check out the agenda and secure your spot today! ℹ️ ejprarediseases.org/ejp-rd-final-c…
Watch our new interview featuring Johan De Graaf, a Patient Expert. Johan highlights the important role of patients in research, emphasizing significant changes in the past years. ▶️ Watch the full video here: youtube.com/watch?v=sADAC3…
Swords, May 2024 - NEW COURSE NOW TAKING BOOKINGS! Date and time: 10 May 2024, Fridays 5pm-6pm OR 6pm-7pm Location: Applewood Community Centre Apply at forms.office.com/e/Uf8edh83jr
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