SOFT UK
@soft_uk
SOFT UK provides information and support for those affected by Trisomy 13, Trisomy 18 (Patau's and Edwards' syndrome) and related disorders
ID:237653154
http://www.soft.org.uk 13-01-2011 09:35:58
2,5K Tweets
631 Followers
236 Following
Beacon for Rare Diseases
@RareBeacon
Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart. Previously known as Findacure.
Unique
@Unique_charity
Unique supports & informs anyone born w/a rare chromosome or gene disorder, their families & carers. Eurordis Patient Organisation Award winner. https://t.co/GkIBlYg5c5
SirJoeDoe
@SirJoeDoe
• King of Crows • 💍 @kiwiplayin • Twitch Affiliate • Wraith Energy Partner Code: SIRJOEDOE for 10% off! • https://t.co/saXeoigDoO • pfp by @kiwiplayin •
SamebutDifferent
@SBDRareProject
Same but Different create thought-provoking exhibitions that stimulate conversation, change attitudes and empower individuals.
SWAN UK (syndromes without a name)
@SWAN_UK
SWAN UK (syndromes without a name) is run by @GeneticAll_UK offering support and information to families of children with undiagnosed conditions. #undiagnosed
Rare Disease UK
@rarediseaseuk
National campaign run by @GeneticAll_UK to improve the lives of those affected by rare conditions and all who support them. #RareDisease.
RARE Revolution Magazine
@RareRevolutionM
Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]
Genetic Alliance UK
@GeneticAll_UK
National charity working for everyone affected by genetic, rare and undiagnosed conditions. We run the campaign @rarediseaseuk and support network @SWAN_UK.
ARCantenatal
@ARCantenatal
The only national charity providing non-directive support & information to expectant and bereaved parents through antenatal screening and diagnosis.
Sands - baby loss charity 💙🧡
@SandsUK
We support anyone affected by pregnancy and baby loss, improve bereavement care and support research to save babies’ lives. #BabyLoss #PregnancyLoss #Research
Medics4RareDiseases
@M4RareDiseases
Medics4RareDiseases is driving an attitude change towards rare diseases amongst medical students and doctors in training #DareToThinkRare
Tommy's
@tommys
We're here to stop the heartbreak and devastation of baby loss and make pregnancy and birth safe - for everyone.
Children's Hospices Across Scotland
@supportCHAS
We’re Children's Hospices Across Scotland (CHAS). We care for children across Scotland with life-shortening conditions and their families. #Keepthejoyalive
EURORDIS-Rare Diseases Europe
@eurordis
An alliance of over 1,000 patient organisations working across borders and diseases to improve the lives of all people living with rare diseases.
Gene People
@GenePeopleUK
Charity supporting families affected by genetic conditions providing the UKs only free Genetic Counsellor-Led Helpline 0800 987 8985 | [email protected]
Sarita Edwards
@SaritaEdwards
Rare Mom (#Trisomy 18) | MHA | CEO @everyoneiswe | Podcaster | Global Keynote | Award Winning Advocate | #RareDisease #Equity #MentalHealth #Policy #MeToo
Wales Gene Park
@WalesGenePark
Twitter feed for the Wales Gene Park: Harnessing Genetics to advance Research, Healthcare, Education and Innovation.
Miscarriage Association
@MiscarriageA
We offer support & information to anyone affected by miscarriage, ectopic or molar pregnancy. Helpline: 01924 200799 or [email protected]
Family Fund
@FamilyFund
UK’s largest charity providing grants for families raising disabled or seriously ill children and young people. https://t.co/TGHdyM2ZFG
Philippa Davies
@PhilippaWriter
Mum to Sam Philippa Davies Writer Founder and CEO Our Sam @OurSamCharity #babyloss Project Funding Manager @Neumark_
Yip Foundation
@YipImpact
Our mission is to make a substantial positive impact on the world one person at a time.
Phil Jerky
@PhilJerky
Tall, beardy, stand-up comedian with Young-onset Parkinson's. All views expressed are my own. Email: [email protected]
Power2InspireUK
@Power2InspireUK
🥇 Working to create a society where everyone can enjoy inclusive sport together. 📧 [email protected] https://t.co/Fgf4bx4Vpk
Eveline_official
@Evelineofficia2
Eveline is a performer with a great passion for music. Watch her new lyrics video Another Night on her YouTube channel 🎧🎤🎶❤
Shining Management (Voices)
@ShiningVoices
All the best voices, all the time. We represent an amazing array of massively talented voice artists. Games, commercial, animation, documentary, corporate, etc
Genomics England
@GenomicsEngland
We’re working to enable faster and deeper genomic research, to bring genomic healthcare to all who need it.
Singing Science (he/him)
@singingscience
Singing Science #Scicomm, with a science music album Giant Leaps and Genomics! The Musical! he/him/Megalodon
Kareem Edwards
@Dad5Hub1
Founding Partner - President, Board of Directors - E.WE Foundation, a 501(c)(3) healthcare advocacy organization.
Francesca Wicks
@francesca_wicks
Info Officer @unique_charity / MSc Genetic Counselling / Former Research Coordinator @imagineidnews. Sarcoma survivor. All views own. She/Her.
AllStripes
@_allstripes
Our mission is to unlock new treatments for people affected by rare disease.🚀
Nick Embleton 🦋🤱🎓🌎🌈🩺🔬🧪
@NeoResearch_Net
#NEC #Breastmilk #Babyloss https://t.co/bEsaJA9NKO personal tweets #MDS stem cell transplant https://t.co/qTJNvbh81z
Memory Milk Gift
@memorymilkgift
Official Milk Bank at Chester account for milk donation following a loss. Follow our other account at @milkbankatchester
European Milk Banks
@MilkBanksEMBA
Official tweets from the EMBA
Time To Talk TFMR
@talkTFMR
🎙 Bi-weekly podcast ~ Empowering listeners in a safe space. This podcast was created for YOU ❤️📱Find us on Apple and Spotify #TimeToTalkTFMR
Sibs
@Sibs_uk
UK charity for brothers and sisters of disabled children and adults.
Rarity Life
@raritylifemag
A new online publication that offers those affected by rare disease, disability & cancer the opportunity to unify & share our collective experience.
Donna Ockenden FRSA, Hon DLitt
@DOckendenLtd
A midwife & nurse, Chair @OckReview Patient safety & family voices at the ❤️of all I do! Proud Ambassador @SandsUK President @Babylifeline Patron @masic_uk
Rareminds
@RaremindsUK
Specialised mental health and wellbeing services for the rare disease community. https://t.co/eVmeTw0aah…
RareDiseaseNurseNetwork
@NurseRare
Helping nurses and clinicians connect in the Rare Disease environment
FOP Friends
@FOPFriends
FOP is one of the rarest and most debilitating conditions known to medicine, causing bone to form in muscles. Charity #1147704
CureGRIN
@CureGrin
CureGRIN is a parent-run foundation committed to improving the lives of people living with GRI disorder. #RareAsOne #GRIdisorder #raredisease
Jillian Hastings Ward
@HastingsJ123
'that mother' - #R4Today🎙Independent Chair of Participant Panel @GenomicsEngland, founding board member @CureGRIN, Mum and wife. Write a bit. Views own
The Lullaby Trust
@LullabyTrust
The Lullaby Trust provides specialist support for bereaved families and promotes expert advice on safer baby sleep. Call our free helpline on 0808 802 6869
Reclaim Social
@ReclaimSocial
We need to make social media more positive. Let’s share more inspiring stories. #ReclaimSocial started 6y ago as a hashtag. Let's keep it going. Feb 6🧡
Derbyshire Maternity and Neonatal Voices
@DerbysMNVP
Working with service users and health care providers to improve maternity and neonatal care in Derbyshire
The National Lottery Community Fund Cymru
@TNLComFundWales
Yn dyfarnu grantiau @TNLUK i gryfhau cymdeithas a gwella bywydau. Awarding @TNLUK funds to projects that strengthen society and improve lives. 📞 0300 1230735
Rainbow Trust Children’s Charity
@RainbowTrustCC
Supporting seriously ill children and their families.
Hailey Nusbaum
@mrs_hnus
World Birth Defects Day 2024
@worldbdday
Partner with us on March 3rd to observe World Birth Defects Day! #WorldBDDay #EveryJourneyMatters #AwarenessWithoutStigma
Beyond the Diagnosis
@BeyondtheDx
Beyond the Diagnosis unites art and science to inspire research and innovation of treatments for people living with rare and neglected diseases.
Sands Insights
@SandsInsights
@SandsUK research, public affairs, campaigns & training & education (Mon-Fri, 9am-5pm). #BabyLoss #PregnancyLoss #SandsResearch #NBCPathway #SavingBabiesLives
Don't Screen Us Out
@dontscreenusout
Creating a world where people with Down’s syndrome are equally valued and have an equal chance of being born.
DSRF_UK
@DSRF_UK
Improving the outcomes for all born with #downsyndrome Acceptance shouldn't mean accepting no #research Tweets by Christine Elliott & Dr Liz Corcoran
Little Mole
@alittlemole
Prosecco socialist. Tofu-eating member of the wokerati. Likely part of the AGC too. https://t.co/r00dCV2T9M
BBC Radio 4
@BBCRadio4
Your audio friend - documentaries, news, comedy and drama on @BBCSounds
BBC Current Affairs
@BBC_CurrAff
We are the BBC's long-form audio department, producing investigative journalism, analysis and documentaries on BBC radio and podcasts. Find us on @BBCSounds.
OurSamBabyLossCharity
@OurSamCharity
Raising awareness, understanding and support for #babyloss. Registered Charity Number 1191411 https://t.co/KkNuFyv4BB Founder/CEO @PhilippaWriter
Catherine Joynson
@CathJoynson
Tweeting personally mostly about genomics, ethics & engagement. Head of Engagement @UK_Biobank. Previously @Nuffbioethics
PSDFreebies
@PSDFreebies
PSD Freebies – Free and Premium Photoshop Resources and Freebies for Designers Download Free PSD, Web Templates, Flyers, Mockups, UI kits, Icons and more.
Dr Jacinta Cordwell
@JacintaCordwell
Consultant Clinical Psychologist and Lead Psychologist for TV&W neonatal ODN and neonatal psychology services at the John Radcliffe, Oxford. All views my own!
The E.WE Foundation
@EveryoneIsWe
Healthcare advocacy organization for families affected by #EdwardsSyndrome or #Trisomy18, other #rarediseases, and #specialhealthneeds.
Healthcare Workers' Foundation 💙
@theHWF
Providing a range of services to support healthcare workers in all aspects of their daily lives. Registered charity 1189737.
The Giving Block
@TheGivingBlock
Want to change the world? We make it easy for nonprofits to fundraise with crypto, stock, cash or DAF donations and for donors to give to their favorite causes.