Bev Power @BevPower4
A good person to know and hang out with. Patient expert #CDH , research author, advocator of charity, Yoga Teacher. Loves family, travel and Yoga. Opinions mine UK Joined September 2019-
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#JoininJune4CDH is an awareness campaign set up in 2010 to educate on Congenital Diaphragmatic Hernia (CDH) and to encourage funding for Research. Each year we choose a different theme or topic to focus on. This year’s theme is individualised care; why it matters and how it can help with transition of care. The basis of any care plan should be evidence. As far as possible the plan should be standardised, to serve as a bench mark for care and outcomes, BUT as we know with CDH there is no clear phenotype or guaranteed set of co morbidities and so standardising care becomes challenging. Therefore, it is important to look at whole person care and that involves a tailored approach. This plan is commonly referred to as an individualised care plan (ICP). With many years of experience is supporting families, it is our opinion that a robust ICP is a key factor in transitioning children to adult services. It gives both the patient and carer a clear ‘map’ of a person’s health, social and personal needs. This can give a patient a sense of autonomy and ability to cope when issues arise later in life. #cdhawareness
Can’t wait to add my decoration to help families ❄️
Our 2025 Snowflake appeal is live! Decorate our beautiful tree in honour or memory of a loved one ❄️ visufund.com/cdh-uk-snowfla… #CDHuksnowflakeappeal #CDH #snowflakeappeal2025 #CDHuk #CDHuk
@NNAP_RCPCH Is this purely for preterm and NEC babies?
Our data on the Amniotic Fluid are finally available on the @humancellatlas just in time for the #hca2024gm Come chat about it at the coffee break!
Wonderful! Always happy to support and promote these talks 🩷🩵 thank you @LeicChildHosp
We were honoured to have Mr. Haitham Dagash, paediatric surgeon @LeicChildHosp give an excellent talk on CDH, ECMO and all the consideration for care, surgery and outcomes.Thank you!! A few of the 30 that attended f2f and virtually from across the UK @CDHUK_CHARITY @NNAUK1
@CDHUK_CHARITY Thank you to Queens University Belfast and @EastwoodPatrice and colleagues from RVI for a special CDH Community Conference! We made lots of new friends and learned new things about patient expectations and priorities #cdh #ccc #qub #cdhuk
We had a fantastic day at our CDH Community Conference in Belfast yesterday, with a great turnout of families! Medical professionals from the RVI and Queen’s University Belfast ran focus groups to obtain patient and family perspectives and gave them the opportunity to engage in research. It is such a positive action to bring families together for peer support and friendship and to be able to showcase the amazing work of CDH UK 🩷🩵 Our next CCC will be announce later this year to take place in 2025. More pictures to follow from the day tomorrow 🥰 #CDH #CDHcommunityconference #CDHuk #CDHpatientjourney #CDHawareness #support
Let's join together on June 28th for #cdhAwarenessDay and spread awareness to raise hope and improve outcomes for individuals living with Congenital Diaphragmatic Hernia and their families. #joininJune4CDH #spreadawareness #raisehope #cdh #cdhawareness
Today is the start of CDH Awareness Month! This is an opportunity to collectively draw attention to Congenital Diaphragmatic Hernia and to highlight its impact on patients and their families. It is also a chance to help improve outcomes. This year’s theme is ‘Family Impact’ and we released our new short information film ‘The CDH Patient Journey’ for you to share earlier this year(see below). We are also releasing our new information booklet ‘CDH and Feeding’ today! Head to our website is this link to see what you can join in this month to help raise #cdhawareness 👇🏿 cdhuk.org.uk/join-in-june-4… youtu.be/tsVtDPclH8s?si… #cdh #joininjune4cdh #awareness
#cdhawarenessmonth #joininjune4cdh is nearly here! What will you do to raise awareness and funds for #cdh 🫶 cdhuk.org.uk/join-in-june-4… #cdhawareness #awareness #awarenessmonth
Great #CDH meeting in #Lille wonderful to share data and learn new things about this challenging conditions @CDHUK_CHARITY @giuseppecala94 @GerliLab and Giorgia D’Ariano @GreatOrmondSt @UCLchildhealth @DBC_ICH @bambinogesu
April has been a busy month! @ernica_ern annual meeting presenting on Patient priorities in research and perspectives in signposting and #cdh2024 symposium plus the launch of @CDHUK_CHARITY new information short film 😀 #cdh #ideaalliance
@RCPCHtweets @asthmalunguk This is very important for our patient community #cdh
Every winter we see our services at breaking point due to illnesses caused by viruses such as RSV. An RSV vaccination programme could be transformative. We need your help to persuade the UK Government to make this a reality. Sign our open letter today! rcpch.eaction.org.uk/RSV
@NeonatalSurgery @NNAUK1 @hannahwellsNHS Is this open to all stakeholders?
We are extremely excited by this research that we supported and of the potential it has to change diagnostic techniques and methods to improve prognosis and outcomes for patients and their families. It is vital that organisations like ours are involved because of the ethical and prognostic factors that new and innovative research can pose and so we are extremely proud to be involved. #cdh #research #cdhuk #MakingADifference #Donate #patientvoice
Amazing working with fetal medicine specialists @PrenatalTherapy @uclh Jan Deprest and Francesca Russo @KU_Leuven @uzleuven to define organoids from congenital diaphragmatic hernia @CDHUK_CHARITY @NIHRresearch @UCLTRO @GerliLab @DBC_ICH nature.com/articles/s4159…
Thrilled to share that our article on primary organoids derivation from human amniotic and tracheal fluids, is now out on @NatureMedicine We present the first atlas of the unperturbed human amniotic fluid cells, containing epithelial progenitors of fetal small intestine, kidney and lung. Culturing these cells in 3D, our innovative low-tech/low-cost method, allowed generation of primary fetal organoids of multiple tissues from continuing pregnancies. Curious? Dive into the full article: nature.com/articles/s4159… @GerliLab @giuseppecala94 @MaxABeesley @GiobbeGiovanni and all our fantastic collaborators! @ucl @uclchildhealth @uclDivofSurgery @GreatOrmondSt @KU_Leuven @TheCrick @WEISS_UCL @ucl_IfWH @Tigem_Telethon @humancellatlas This work would not have been possible without the support of: @NIHRresearch @MSCActions @uclTRO @GOSHCharity @Kidney_Research @CDHUK_CHARITY @wellcometrust @EPSRC @Royalacademyof @ArmeniseHarvard @MinisteroSalute @MonashScholars @longfonds @oakfnd @DiamondLightSou #PrenatalMedicine #RegenerativeMedicine #FetalDevelopment #MedicalAdvancements #BiomedicalResearch #FetalHealth #MedTech #PrenatalScreening #InnovationsInHealthcare #MedicalBreakthroughs #HDBR #AFO #TFO #AmnioticFluidOrganoids
@StephenHearns1 @easyJet First thing I was taught in nursing training. Can still remember how to do it, but can never remember which is systolic and which is diastolic!
Giuseppe Calà @giuseppecala94
181 Followers 396 Following EMBO Postdoc fellow playing with organoids and tissue engineering. From South Italy to @UCLchildhealth to @EMBL
Mattia FM Gerli, PhD @GerliLab
331 Followers 697 Following Associate Professor in Stem Cell Science and Marie Skłodowska-Curie alumni @ UCL
S R @SeiSiarh
15 Followers 478 Following
Patrice Eastwood @EastwoodPatrice
58 Followers 145 Following Northern Irish Paeds Surgery Trainee. Interested in CDH, fetal surgery and good wine.
Rhiannon Jones @Rhi_jones83
418 Followers 962 Following ANP on NICU. Passionate about neonatal surgery. Mother and wife. A welsh country girl in the big city. All views are my own.
Joe Davidson @PaedSurgJoe
573 Followers 1K Following Paediatric Surgery Trainee // @The_MRC CRTF // PhD candidate @UCLchildhealth @UCL_IfWH
Tim Van Mieghem @TimVanMieghem
801 Followers 301 Following maternal fetal medicine, prenatal diagnosis, obstetrics, fetal surgery, fetal neurology, @uoftobgyn, @SinaiHealth
Sarah @SarahxHx_87
507 Followers 981 Following You can close your eyes to the things you don't want to see but you cannot close your heart to the things you don't want to feel
GIFT Surg @GIFT_Surg
358 Followers 240 Following Guided Instrumentation for Fetal Therapy and Surgery: @KingsImaging @ucl @WEISS_UCL @KU_Leuven @uclh @uzleuven. Funded by @wellcometrust & @epsrc
Fetal Maternal 2020 V... @Fetal2020
83 Followers 436 Following Fetal and Maternal Virtual Congress [email protected] Whatsapp +447459639914
IDEA @IDEA_ALLIANCE
26 Followers 35 Following We are the International Diaphragmatic & hiatus hernia, Eventration & Abdominal Wall anomalies alliance. Working together for better outcomes what a great idea!
Chris D @Chazdavies1084
314 Followers 2K Following
Pediatrics and Neonat... @neonatal_med
748 Followers 1K Following Journal of Pediatrics and Neonatal Medicine is an International Peer Reviewed Open Access Journal publishing original research contributions from researchers
Louise Bowman @LouiseB67213401
78 Followers 115 Following Head of Family Services @twinstrust. Raising awareness on multiple births, life with Twins, triplets or more, IVF, prematurity and baby loss @twinstrustbsg
sharon @sharon38366023
7 Followers 12 Following
Infant Journal @InfantJournal
853 Followers 459 Following
Soban Hameed @ChSoban9
313 Followers 3K Following Consultant Paeds Surgeon at Children's hsptl Lahore l Father and Husband l Love fun family n friends l like perfumes l Love to hangout l Love nature
HAPP-e: Health of Adu... @happeispup
195 Followers 335 Following We are inviting adults with a history of preterm birth to be part of an innovative way of doing research. For inquiries, please contact: [email protected]
Global Birth Defects @GlobalBirthDfx
342 Followers 333 Following Through an app & resources, improving birth defect surveillance systems in low-resource areas.
The PALOH Trial @PALOH_Study
373 Followers 318 Following The Pharmacogenetics To Avoid Loss of Hearing Trial | Supported by @NIHRresearch @RNID and @ManchesterBRC | Reporting March 2022
Neonatal Surgery @NeonatalSurgery
2K Followers 661 Following A group of Neonatal and Paediatric Nurses, AHPs ACPs with a drive to standardise and improve the care of Surgical Neonates. A special interest group of @NNAUK1
Jacob Westaway @JacobWestaway
104 Followers 284 Following Bioinformatician. Working on zoonotic malaria and dabbling in microbiome.
David K @ELBANDITO77
28 Followers 295 Following
Emilly Jane @emillymurray
192 Followers 558 Following Mum to Esmae, Ellie & Joseph #autism #parentcarer #supportthestrikes
Sarah Winfield @winners352
3K Followers 4K Following Consultant in Obstetrics & Maternal Medicine. Head of Obstetrics Service @MidYorkshireNHS. Safe and kind maternity care. Mum of two👭 & 🐶. Views own.
Fiona @fiona_metcalfe
655 Followers 1K Following Lead Nurse Neonatal Surgery. PNA. Passionate about babies, families, surgery, collaboration and doing our best.Chair- National Neonatal surgical interest group
CDH UK @CDHUK_CHARITY
2K Followers 590 Following Leading Reg. Charity 1106065 helping to improve outcomes for Congenital Diaphragmatic Hernia. Supporting, Raising Awareness, Promoting & funding research #CDH
Abhishek Gautam @Abhishe01485161
28 Followers 259 Following Computer Science Eng and Spiritual Seller.
Marian Knight MBE @Marianfknight
6K Followers 81 Following Maternal and child health researcher and public health physician @UniofOxford. Scientific Director for Research Infrastructure @NIHRresearch. See also 🦋
Giuseppe Calà @giuseppecala94
181 Followers 396 Following EMBO Postdoc fellow playing with organoids and tissue engineering. From South Italy to @UCLchildhealth to @EMBL
Patrice Eastwood @EastwoodPatrice
58 Followers 145 Following Northern Irish Paeds Surgery Trainee. Interested in CDH, fetal surgery and good wine.
Mattia FM Gerli, PhD @GerliLab
331 Followers 697 Following Associate Professor in Stem Cell Science and Marie Skłodowska-Curie alumni @ UCL
MAYAH’S LEGACY @MayahsLegacy
154 Followers 306 Following We guide women to feel confident and heard when discussing their health. We build confidence rooted in empathy
Midwifery Society @ B... @themwcircle_BNU
117 Followers 150 Following 🤱🏽 Views our own 🫄🏿 Retweets aren't endorsements 👩🏼🍼 For advice/support in your pregnancy journey please contact your healthcare provider 🩺
Baby Loss Awareness W... @BLA_Campaign
13K Followers 1K Following 9-15 October. A time to come together, remember our babies, raise awareness and drive change💖💙 #WaveOfLight🕯️ #BLAW
ERN eUROGEN @ERN_eUROGEN
1K Followers 533 Following Improving diagnosis, treatment & care for rare uro-recto-genital diseases & complex conditions needing highly specialised surgery. Funded by the EU.
ERDERA @ERDERA_org
4K Followers 2K Following The European Rare Diseases Research Alliance. Co-funded by European Union's @HorizonEU Research & Innovation programme. Views expressed are of authors only.
ISUOG @ISUOG
22K Followers 843 Following #LoveUltrasound ❤️ International Society of Ultrasound in Obstetrics and Gynecology.
Giving at UCL @UCLGiving
971 Followers 292 Following We bring together visionary supporters at @UCL to change the world. #HereItWillHappen
UCL Great Ormond Stre... @UCLchildhealth
6K Followers 870 Following @UCL Great Ormond Street Institute of Child Health: improving the health & well-being of children and the adults they'll become. LinkedIn: https://t.co/F0hD562szz
Paolo De Coppi @paolodecoppi
2K Followers 212 Following Consultant Paediatric Surgeon at Great Ormond Street Hospital/UCL Institute of Child Health with interest in congenital malformation and regenerative medicine
Mediaplanet UKIE @MediaplanetUK
5K Followers 1K Following Mediaplanet specialises in the local production of unique and engaging campaigns, created in collaboration with renowned influencers and associations.
Milanka Brooks @MilankaBrooks
2K Followers 404 Following USS Callister: Into Infinity Black Mirror, Season 4 and 7 Actress & writer of ‘Mum And I Don’t Talk Anymore’
Simon Eaton @simonjeaton1
222 Followers 229 Following Apple through and through...but like the fruit
Joe Davidson @PaedSurgJoe
573 Followers 1K Following Paediatric Surgery Trainee // @The_MRC CRTF // PhD candidate @UCLchildhealth @UCL_IfWH
James Sanderson @JamesCSanderson
10K Followers 1K Following CEO @Sue_Ryder, Chair @GSP_Alliance, Governor, The Place, My Views
WHF Events @WHFEvents
2K Followers 505 Following Informative and impartial health policy seminars from the Westminster Health Forum #WHFEvents Retweets ≠ Endorsement
Chris D @Chazdavies1084
314 Followers 2K Following
Tim Van Mieghem @TimVanMieghem
801 Followers 301 Following maternal fetal medicine, prenatal diagnosis, obstetrics, fetal surgery, fetal neurology, @uoftobgyn, @SinaiHealth
Biomedical Engineerin... @KingsImaging
7K Followers 1K Following This account has been archived. For news follow us on https://t.co/cX0AEhOqfB
Rajath @FoolzWizdom
3K Followers 1K Following Sober but funny, prone to epiphany ।Wordsmith। Coffee & books। Hassled Bangalorean।Earworms। Photos।Calls a Neonatology + Child advocacy @DrRajathAthreya
Disabled Children's P... @DCPcampaign
18K Followers 2K Following We're a coalition of organisations campaigning to improve support for disabled children, young people & families. #FightForOrdinary
CDC @CDC_tweets
23K Followers 2K Following We’re stepping away from X for the foreseeable future. The platform no longer aligns with our values or serves as an effective space to share our work.
Fetal Maternal 2020 V... @Fetal2020
83 Followers 436 Following Fetal and Maternal Virtual Congress [email protected] Whatsapp +447459639914
Contact @contactfamilies
33K Followers 6K Following UK disability charity for all families caring for a disabled child ☎️ support, info & advice ❤️ bringing families together 📢 campaigning for change!
ERNICA @ernica_ern
679 Followers 129 Following The European Reference Network for Rare Inherited Congenital Anomalies
Cochrane Neonatal @CochraneNeonate
10K Followers 209 Following We prepare systematic reviews of randomized controlled trials (RCTs) for treatment for neonatal diseases or problems.
Evidence-Based Neo @EBNEO
15K Followers 2K Following The international society disseminating neonatal clinical research evidence: #ebneoalerts curate, #ebneoreviews appraise, #ebneopolls survey.
The Neonatal Society @NeonatalSociety
7K Followers 91 Following Brings together scientists and clinicians with an interest in the fetus and newborn with the objective of promoting neonatal science (registered charity 260349)
Neonatal Education @LeedsNeoEd
2K Followers 105 Following Tweeting neonatal education tips for all in accessible bite sized chunks!
GIFT Surg @GIFT_Surg
358 Followers 240 Following Guided Instrumentation for Fetal Therapy and Surgery: @KingsImaging @ucl @WEISS_UCL @KU_Leuven @uclh @uzleuven. Funded by @wellcometrust & @epsrc
IDEA @IDEA_ALLIANCE
26 Followers 35 Following We are the International Diaphragmatic & hiatus hernia, Eventration & Abdominal Wall anomalies alliance. Working together for better outcomes what a great idea!
Paediatric Critical C... @PICSociety
9K Followers 162 Following PCCS is a professional, multi-disciplinary, membership organisation representing the interests of those delivering paediatric critical care in the UK
UCL EGA Institute for... @UCL_IfWH
2K Followers 470 Following University College London (@UCL) Elizabeth Garrett Anderson Institute for Women’s Health. Better lives for women and babies across the world.
Anna David @PrenatalTherapy
3K Followers 337 Following Obstetrician and specialist in maternal fetal medicine, with an interest in developing prenatal therapies for pregnancy complications and congenital disease
Louise Bowman @LouiseB67213401
78 Followers 115 Following Head of Family Services @twinstrust. Raising awareness on multiple births, life with Twins, triplets or more, IVF, prematurity and baby loss @twinstrustbsg
Neema Kaseje @NKaseje
2K Followers 877 Following #communityaction #youth & #tech |@WEF ygl17 | PhD @LSHTM | @SSRG_solutions | integrated health interventions #Siaya | Children’s surgery #Turkana
Infant Journal @InfantJournal
853 Followers 459 Following
NW Neonatal ODN @NWNeonatalODN
4K Followers 838 Following North West Neonatal Operational Delivery Network. Working together to provide the highest standard of care for babies and their families.
vCreate NICU Diaries�... @vCreateNICU
3K Followers 1K Following Secure video diaries supporting family engagement in the Neonatal Intensive Care Unit.
Prof Nick Embleton �... @NeoResearch_Net
5K Followers 2K Following #Breastmilk #Babyloss #LactationAfterLoss #Parents #FICare
Neonatal Nurses Assoc... @NNAUK1
3K Followers 918 Following The national organisation representing, supporting & celebrating neonatal nurses & promoting neonatal nursing for the benefit of newborns & families.
Global Birth Defects @GlobalBirthDfx
342 Followers 333 Following Through an app & resources, improving birth defect surveillance systems in low-resource areas.
Jacob Westaway @JacobWestaway
104 Followers 284 Following Bioinformatician. Working on zoonotic malaria and dabbling in microbiome.
Neonatal Surgery @NeonatalSurgery
2K Followers 661 Following A group of Neonatal and Paediatric Nurses, AHPs ACPs with a drive to standardise and improve the care of Surgical Neonates. A special interest group of @NNAUK1






