Cure and Action for Tay-Sachs (CATS) Foundation @Tay_Sachs
Furthering research and supporting families affected by Tay-Sachs and Sandhoff #taysachs #sandhoff #cure #rarediseases #smallcharity #10YearsofCATS cats-foundation.org London, United Kingdom Joined May 2011-
Tweets2K
-
Followers844
-
Following896
-
Likes1K
Our wishes to all our families and supporters at #catsfoundation.
We are very excited to announce that we will be holding the 10th European Tay-Sachs and Sandhoff Family Conference on 29th -30th November. To register your attendance, click on the link below 👇 hopin.com/events/10th-eu…
@Tay_Sachs CATS Foundation – Reimagining patient support in a post-COVID landscape. While many have returned to business as usual, some organisations are harnessing the benefit that this wrap-around virtual connection can provide. bit.ly/Reimagining-Pa… #RareDisease #Advocacy
Ten year old rare sibling, Raife has written a review on our book 'A present for my sister' which has been published in Rare Revolution Magazine. Please follow the link to read 👇👇 bit.ly/CATS-PresentFo…
Tomorrow is Rare Disease Day 2023. This week, we will be sharing photos of some of our amazing children who live/have lived with Tay-Sachs and Sandhoff disease. We will be sharing some facts about Rare disease. #rarediseaseday #Taysachs #Sandhoff #community #thecatsfoundation
Today is the day! The 9th European Tay-Sachs and Sandhoff Family Conference. Join us by clicking the link below 👇👇 hopin.com/events/9th-eur…
One day to go until our 9th European Tay-Sachs and Sandhoff Family Conference! 👇 If you want to sign up it's free and easy just click the link below 👇👇 hopin.com/events/9th-eur…
One day to go until our 9th European Tay-Sachs and Sandhoff Family Conference! 👇 If you want to sign up it's free and easy just click the link below 👇👇 hopin.com/events/9th-eur…
A huge thank you to Azafaros for sponsoring our 9th European Tay-Sachs and Sandhoff Family Conference 2022.
Introducing the speakers at the 9th European Tay-Sachs and Sandhoff Family Conference. 👇 If you want to sign up it's free and easy - click below 👇 hopin.com/events/9th-eur…
A huge thank you to Sanofi for sponsoring our 9th European Tay-Sachs and Sandhoff Family Conference 2022.
Introducing the speakers at the 9th European Tay- Sachs and Sandhoff Family Conference. 👇 If you want to sign up it's free and easy - click below 👇 hopin.com/events/9th-eur…
A huge thank you to JCR Pharmaceuticals for sponsoring our 9th European Tay- Sachs and Sandhoff Family Conference 2022.
Introducing the speakers for the 9th European Tay-Sachs and Sandhoff Family Conference. If you want to sign up it's free and easy - just click the link below 👇👇 hopin.com/events/9th-eur…
Introducing the speakers for day two of the 9th European Tay - Sachs and Sandhoff Family Conference. 👇 If you want to sign up it's free and easy - click below 👇 👇 hopin.com/events/9th-eur…
Introducing the speakers for day two of the 9th European Tay - Sachs and Sandhoff Family Conference. 👇 If you want to sign up it's free and easy - click below 👇 👇 hopin.com/events/9th-eur…
Introducing the speakers for day one of the 9th European Tay - Sachs and Sandhoff Family Conference. 👇 If you want to sign up it's free and easy - click below 👇 👇 hopin.com/events/9th-eur…
ONE WEEK TO GO! 👇 If you want to sign up it's free and easy - click below 👇 👇 hopin.com/events/9th-eur…
Introducing the speakers for day one of the 9th European Tay - Sachs and SandhoffFamily Conference. 👇 If you want to sign up it's free and easy - click below 👇👇 hopin.com/events/9th-eur…
Beacon for Rare Disea.. @RareBeacon
12K Followers 11K Following Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart. Previously known as Findacure.
RARE Revolution Magaz.. @RareRevolutionM
12K Followers 8K Following Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]
Medics4RareDiseases @M4RareDiseases
5K Followers 2K Following Medics4RareDiseases is driving an attitude change towards rare diseases amongst medical students and doctors in training #DareToThinkRare
dazzle4rare @dazzle4rare
1K Followers 1K Following Est. 2016 | Signal boost RARE with #dazzle4rare every Aug | #Signalise is our #podcast | Our 🔗 https://t.co/bS5LyCTiZ5
Gene People @GenePeopleUK
6K Followers 3K Following Charity supporting families affected by genetic conditions providing the UKs only free Genetic Counsellor-Led Helpline 0800 987 8985 | [email protected]
Rare Patient Voice @rarepatientvoic
2K Followers 4K Following We help clients find rare and non-rare disease patients and caregivers for studies, and connect patients and caregivers with paid research opportunities.
Cambridge Rare Diseas.. @camraredisease
8K Followers 7K Following Improving #RareDisease lives. Creators of #RAREfest, #RAREsummit, Companies Forum & #UniqueFeetCam https://t.co/bWJ8DVF9iw
AllStripes @_allstripes
3K Followers 1K Following Our mission is to unlock new treatments for people affected by rare disease.🚀
Ataxia and Me CIO 118.. @Ataxia_and_Me
4K Followers 3K Following #Ataxia is a #raredisease affecting #Balance #Speech and #Coordination #Patients Helping Patients #MovementDisorder #Health #Medical #pharma
Jeans for Genes UK @jeansforgenes
17K Followers 9K Following Wear your jeans, donate & transform the lives of people living with genetic disorders. Find out more about us and all the ways to get involved!
Genetic Alliance UK @GeneticAll_UK
16K Followers 2K Following National charity working for everyone affected by genetic, rare and undiagnosed conditions. We run the campaign @rarediseaseuk and support network @SWAN_UK.
SamebutDifferent @SBDRareProject
2K Followers 3K Following Same but Different create thought-provoking exhibitions that stimulate conversation, change attitudes and empower individuals.
Lilianna Shippey @LilianShip
30 Followers 5K Following
Augustina Petrin @petrin42886
96 Followers 5K Following
Lashawna Drumbore @drumbore58093
89 Followers 5K Following
Malisa Dunkel @DunkeMali
52 Followers 5K Following
Luna @ChangeupCh88176
8 Followers 817 Following
holly snyder @storm33333333
1 Followers 31 Following
Canadian Rare Disease.. @CanadianRDN
226 Followers 592 Following Pan-Canadian network uniting clinical, scientific and patient experts to improve the health and well-being of individuals affected by rare diseases.
Mostafa Mithu @MithuMosta16585
3 Followers 23 Following
💚ICE💚SP @SSharrion25009
63 Followers 443 Following Shout out to @icespicee_ by drinking starrg And she on commercial to shut up
ImmunoCompromised Lan.. @immunlanyardsuk
5 Followers 77 Following Produced with care in the UK to help clinically vulnerable people navigate a ‘post-Covid’ world more safely. #cvid #transversemyelitis #neuromyelitisoptica
Amber ✌🏼 @A_joy_17
969 Followers 985 Following just a girl from the countryside sharing 100 photos a day of her dog 🐶 #efc ⚽️ 💙
Sinead Summers 💙 @SineadS4
68 Followers 269 Following Paediatric nurse, passionate about the NHS. Lover of the natural world. Netball fan. Bereaved mum of a wonderful little girl.
Nicola Baugh @NicolaBaugh
301 Followers 754 Following Busy human. Mum. Wife. Chartered Landscape Architect. Sometimes Baugh, sometimes Brown. Managing Director of @HuskissonBrown 💚#chooselandscape
Ashish Aggarwal @Ashish_agr_awal
54 Followers 129 Following I received nothing I wanted, but I received everything I needed... 😉
Personalize My Medici.. @PMM_2022
183 Followers 1K Following Helping you make the most of Medical Innovation. This is our new account. Please follow our old account too @myprecisionmed. PMM is an Amazon Affiliate.
Dr. Louise Oni @louise_oni
2K Followers 3K Following U.K Senior Lecturer & honorary NHS consultant in paediatric nephrology with interest in renal inflammatory diseases. All comments are personal opinion.
Cripples Unite @UniteCrips
15 Followers 397 Following
Hannah Scott @HannahM_Scott20
1K Followers 4K Following Research assistant and PhD candidate @CSI_KCL Paediatric Palliative Care | Pronouns: She/They | Disabled 🩼 & LGBTQ+ 🏳️🌈 | Views my own.
Roshiver @Roshiver
5 Followers 23 Following
Rareminds @RaremindsUK
983 Followers 2K Following Specialised mental health and wellbeing services for the rare disease community. https://t.co/eVmeTw0aah…
Alexandra Downes @PaedsDoctorAlex
12 Followers 160 Following Neonatal Registrar BSc Human Genetics @M4RareDiseases Clinical Ambassador @LondonPaeds Education Subgroup Member
Zuggs @emma_zuggs
66 Followers 3K Following
Eileen 💚 @borowiecrn
110 Followers 265 Following ER nurse by day, proud wife and mommy. 💚 Kidney Disease Advocate 💚, Donate Life Supporter ♻️, Reality TV lover
Rare Disease and Orph.. @OAE_RDODJ
439 Followers 2K Following Rare Disease and Orphan Drugs Journal(RDODJ) is an international peer-reviewed, open access, online journal.
PEP Talks @PrimePEPtalks
270 Followers 1K Following PEP=Patient Engagement Practices! We amplify the patient voice to deliver a triple win for patients, Pharma, and society. - Prime Patient of @PrimeGlobalBuzz
genov.eth @NFTRepository
2K Followers 5K Following NFT Collector | NFT Enthusiast | Blockchain Developer | World is changing now, don’t fall behind 💕
Institut für Humange.. @hug_leipzig
242 Followers 292 Following Das Institut bietet genetische Diagnostik & ambulante Beratungen an. Zudem erfolgt Forschung zu seltenen Erkrankungen & studentische Lehre am @UKL_Leipzig.
SPIRE Network @SPIREConcept
512 Followers 2K Following SPIRE-Severe neurological imPairment in IREland; examining prevalence, healthcare utilisation and parental experience. Supported by CHI Research & Innovation
Rare Diseases @RareDiseases23
55 Followers 466 Following We welcome you to "6th International Conference on Rare Diseases" which is going to be scheduled on February 20-21, 2023 Amsterdam, Netherlands.
PPP Life Sciences @PPP_LifeScience
9 Followers 26 Following Life Science policy from Public Policy Projects. Info. on report launches, thought leadership and event invitations. Main - @policy_projects
Laurie Mellies Melli @LaurieMelli
33 Followers 100 Following
Make Good Grow @makegoodgrow
947 Followers 3K Following 💚 Making a difference on your doorstep 👆 Local project activators
Barbara Brucker @BarbaraBrucker1
1 Followers 10 Following
Anna Dickinson @anna_dickins0n
559 Followers 1K Following Head of Strategy, Office of @nicolablackwood | Senior Researcher, Science & Tech @ukonward | Former @Policy_Projects | 2023 runner @Marathon_Mcr | Views my own
Laura @llopezdefrutos
79 Followers 192 Following
Charles Lourenco @charlesgenetica
858 Followers 5K Following Médico Geneticista Especialista em Genética Clínica pela Sociedade Brasileira de Genética Médica Prof Doutor - Faculdade de Medicina de São José do Rio Preto
Kathy Wesolowski @KathyLutzWeso
61 Followers 191 Following
Rachel Turner @RachelT0324
54 Followers 217 Following Dogs are great, chocolate is good, just keep smiling and everything will work out
Elliot @shushthewords
320 Followers 2K Following Honestly just here to make lists. I’m @ElliotElephants most everywhere else. I’m an #ActuallyAutistic queer, disabled Quaker. He/they pronouns
Cognitant @Cognitant
407 Followers 459 Following We empower people with clear, reliable health information, allowing patients to better manage their health and HCPs to deliver best care.
Unique @Unique_charity
8K Followers 2K Following Unique supports & informs anyone born w/a rare chromosome or gene disorder, their families & carers. Eurordis Patient Organisation Award winner. https://t.co/GkIBlYg5c5
Patient Academy for I.. @AcademyPatient
135 Followers 268 Following The PAIR Academy is set-up to develop and maintain capacity amongst patients across the globe, in an effort to enable them to engage with their health-systems.
CURE INAD UK @inad_uk
52 Followers 69 Following Infantile Neuro Axonal Dystrophy is a rare inherited disorder. Children have a life expectancy of 5-10 years. Please help us to fund research to find a cure
Beacon for Rare Disea.. @RareBeacon
12K Followers 11K Following Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart. Previously known as Findacure.
EURORDIS-Rare Disease.. @eurordis
32K Followers 2K Following An alliance of over 1,000 patient organisations working across borders and diseases to improve the lives of all people living with rare diseases.
RARE Revolution Magaz.. @RareRevolutionM
12K Followers 8K Following Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]
Rare Disease Day @rarediseaseday
44K Followers 3K Following 29 February 2024 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases. #RareDiseaseDay
Medics4RareDiseases @M4RareDiseases
5K Followers 2K Following Medics4RareDiseases is driving an attitude change towards rare diseases amongst medical students and doctors in training #DareToThinkRare
dazzle4rare @dazzle4rare
1K Followers 1K Following Est. 2016 | Signal boost RARE with #dazzle4rare every Aug | #Signalise is our #podcast | Our 🔗 https://t.co/bS5LyCTiZ5
Gene People @GenePeopleUK
6K Followers 3K Following Charity supporting families affected by genetic conditions providing the UKs only free Genetic Counsellor-Led Helpline 0800 987 8985 | [email protected]
Cambridge Rare Diseas.. @camraredisease
8K Followers 7K Following Improving #RareDisease lives. Creators of #RAREfest, #RAREsummit, Companies Forum & #UniqueFeetCam https://t.co/bWJ8DVF9iw
AllStripes @_allstripes
3K Followers 1K Following Our mission is to unlock new treatments for people affected by rare disease.🚀
Ataxia and Me CIO 118.. @Ataxia_and_Me
4K Followers 3K Following #Ataxia is a #raredisease affecting #Balance #Speech and #Coordination #Patients Helping Patients #MovementDisorder #Health #Medical #pharma
RDI @rarediseasesint
5K Followers 699 Following Rare Diseases International - the global alliance of rare disease patients & families
Jeans for Genes UK @jeansforgenes
17K Followers 9K Following Wear your jeans, donate & transform the lives of people living with genetic disorders. Find out more about us and all the ways to get involved!
The Pituitary Foundat.. @Pituitary_org
8K Followers 5K Following Supporting anyone affected by pituitary conditions through helplines, support groups, and events. Join #TeamPituitary to raise essential funds
Muscular Dystrophy UK @MDUK_News
18K Followers 3K Following We connect a community of over 110,000 people living with muscle wasting and weakening conditions. Together we are stronger. Join us. Our #MusclesMatter.
Genetic Alliance UK @GeneticAll_UK
16K Followers 2K Following National charity working for everyone affected by genetic, rare and undiagnosed conditions. We run the campaign @rarediseaseuk and support network @SWAN_UK.
Global Genes @GlobalGenes
30K Followers 6K Following Empowering the Next Generation Rare Disease Advocate Merged with RARE-X Dec. 2022. #CareAboutRare
Fondation Maladies Ra.. @fdmaladiesrares
3K Followers 364 Following Fondation de coopération scientifique | Foundation For Rare Diseases - Foundation for scientific cooperation
SamebutDifferent @SBDRareProject
2K Followers 3K Following Same but Different create thought-provoking exhibitions that stimulate conversation, change attitudes and empower individuals.
NORD @RareDiseases
41K Followers 3K Following National Organization for Rare Disorders (#NORD) is the voice of the #RareDisease community. Official US sponsor of #RareDiseaseDay.
The State of LinkedIn @StateOfLinkedIn
308K Followers 3 Following LinkedIn is a breeding ground for lies & brown-nosing. Exposing the worst. We are in no way associated with LinkedIn.
Recursion @RecursionPharma
11K Followers 787 Following Decoding biology to radically improve lives. The industrial revolution of drug discovery is here.
Krzysztof Potempa @BRAINCURES
3K Followers 5K Following Founder & CEO @BRAINCURESLtd and dreamster dedicated to prevention and treatment of mental health disorders that affect at least 1 in 6 people worldwide
Dr. Louise Oni @louise_oni
2K Followers 3K Following U.K Senior Lecturer & honorary NHS consultant in paediatric nephrology with interest in renal inflammatory diseases. All comments are personal opinion.
Joe Lycett @joelycett
1.4M Followers 1 Following I am the comedian formerly known as Hugo Boss. Pre-order Joe Lycett’s Art Hole now
Rare Disease and Orph.. @OAE_RDODJ
439 Followers 2K Following Rare Disease and Orphan Drugs Journal(RDODJ) is an international peer-reviewed, open access, online journal.
Jennifer Pappadakis @JenniferPappad1
8 Followers 75 Following
NCBRS Worldwide Found.. @ncbrsfoundation
301 Followers 433 Following Our aim is to help families by providing practical advice, annual conferences, raising awareness of #NCBRS and possibly help to fund any future research studies
Cure GM1 Foundation @CureGM1
269 Followers 27 Following The Cure GM1 Foundation is dedicated to directly funding research for a cure for GM1 Gangliosidosis, a rare disease that is always fatal in children.
Cognitant @Cognitant
407 Followers 459 Following We empower people with clear, reliable health information, allowing patients to better manage their health and HCPs to deliver best care.
Spinal Muscular Atrop.. @SMA_UK_
3K Followers 881 Following Supporting anyone living in the UK affected by Spinal Muscular Atrophy (SMA). On Twitter to raise awareness of the condition, our activity and related topics
Public Policy Project.. @Policy_Projects
2K Followers 1K Following Public Policy Projects (PPP) is an organisation operating at the heart of health and life sciences policy delivery through convening events, reports and news.
Inclusive Skating @InclusiveSk8
823 Followers 1K Following IS is a World-recognised Charity that provides Events, Activities, Educational Resources, Training & Championships for skaters with additional needs.
Rareminds @RaremindsUK
983 Followers 2K Following Specialised mental health and wellbeing services for the rare disease community. https://t.co/eVmeTw0aah…
Anna Dickinson @anna_dickins0n
559 Followers 1K Following Head of Strategy, Office of @nicolablackwood | Senior Researcher, Science & Tech @ukonward | Former @Policy_Projects | 2023 runner @Marathon_Mcr | Views my own
Sézane @SEZANE_PARIS
15K Followers 305 Following Sézane was made in Paris, this account was made for you. Need help with something? Your hotline to Paris: [email protected]
PEP Talks @PrimePEPtalks
270 Followers 1K Following PEP=Patient Engagement Practices! We amplify the patient voice to deliver a triple win for patients, Pharma, and society. - Prime Patient of @PrimeGlobalBuzz
Patient Academy for I.. @AcademyPatient
135 Followers 268 Following The PAIR Academy is set-up to develop and maintain capacity amongst patients across the globe, in an effort to enable them to engage with their health-systems.
Dan McKay @danmarkmckay
131 Followers 900 Following
Samantha Barber @SamanthaJBarber
1K Followers 1K Following Charity sector professional, trustee of RAFA & RAFA Housing, previous chair of Amber Housing. Passionate about the third sector. All views are purely personal.
Glen Turner @well_eye_never
1K Followers 985 Following Love London, love laughter, love life. 😎 Visually impaired support worker, accessibility advocate, culture vulture & London explorer.
London Stadium @LondonStadium
18K Followers 548 Following Proudly located in @noordinarypark, home to @WestHam, world class athletics, concerts, Major League Baseball and serve as a thriving community hub.
CURE INAD UK @inad_uk
52 Followers 69 Following Infantile Neuro Axonal Dystrophy is a rare inherited disorder. Children have a life expectancy of 5-10 years. Please help us to fund research to find a cure
Lee Reavey @lreavey
141 Followers 440 Following Husband, father of 4. Co-Founder/CEO of the @ncbrsfoundation… 🧡💚💙 Passionate about #RareDisease “All views are my own."
Fundación Síndrome .. @FundacionDravet
3K Followers 1K Following A través de la investigación, luchamos por una cura del síndrome de #Dravet. @RetoDravet es nuestro equipo solidario, el más grande del mundo💜
National Press Founda.. @NatPress
11K Followers 4K Following We make good journalists better. All of our fellowships and programs are free and on the record. We also celebrate journalistic excellence through our awards.
UMass Chan Medical Sc.. @UMassChan
14K Followers 4K Following Official X home of UMass Chan Medical School: pioneering education, research and health care delivery. See how we are advancing medicine together.
Gerald E. Finken @geraldfinken
7K Followers 6K Following Disruptor, innovator, and pioneer of direct-to-patient #clinicaltrial services
thomas langdown @langers_1
62 Followers 334 Following
Will Cooke @willcooke
516 Followers 605 Following Rides bikes, sports a beard, likes BBQ. Chats about strat n that. Was #KittenCamp curator. Now just…
Third Sector Events @THISectorEvents
4K Followers 1K Following Each Third Sector event is filled with ideas and fresh thinking. This account brings you updates on conferences, forums and awards from @ThirdSector.
Genesis Orwell Mencap @OrwellMencap
516 Followers 672 Following Orwell Mencap is a local charity. We provide personalised services for adults and children with disabilities from the Genesis centre and in the local community.
Mitochondrial Disease.. @MitoSupplement
323 Followers 819 Following We are a team of researchers from the Alberta Children’s Hospital Research Institute in Calgary. Join our study today! https://t.co/wjU1nf15gy
Caitlin Nichols, PhD @caitlinanichols
790 Followers 1K Following @Harvard Biomedical Sciences PhD | Writer, editor, speech geek, tap dancer | #cancergenomics #scicomm #raredisease | Views my own
Charlie @charlesasteward
880 Followers 3K Following Doctor of molecular genomics, neurology, disability advocate, classical music. Opinions expressed are my own and not my employer. RT or likes ≠ endorsement.
Yann Le Cam @yann_eurordis
1K Followers 263 Following CEO @eurordis, #raredisease #patient advocate. Member of @rarediseasesint council. Tweets are my own.
The Student Voice Pri.. @RDStudentVoice
264 Followers 340 Following Closed for entries! Annual, international essay competition for medical & nursing students focused on rare diseases📝💊🩺 Run by @RareBeacon & @M4RareDiseases
StrawberrySocial @StrawberrySoc
9K Followers 7K Following Specialists in community management, customer support, content moderation, and online safety for charities and organisations.
MyPurplePatch 💙 @Patch1Purple
401 Followers 485 Following
Cavernoma Alliance UK.. @cavernomauk
1K Followers 479 Following Registered UK charity supporting people living with cavernoma 📞 Book a call https://t.co/vjmbvthmJO ✉️ Email [email protected]
UK Thalassaemia Socie.. @teamukts
2K Followers 668 Following The only national charity working exclusively for all things #thalassaemia. We support families & professionals, educate, campaign for change & fund research.
Joe Freeman @JosephFreeman
4K Followers 2K Following Social and digital stuff in healthcare and charities. Find me elsewhere online.
@ODExpertGroup @odexpertgroup
671 Followers 4K Following Established in 2020, the European Expert Group on Orphan Drug Incentives brings together representatives of the broad rare diseases community.
Julian Campbell Found.. @JulianCampbellF
3K Followers 3K Following Early intervention service that helps young people in schools & the community manage their Mental Health/ well-being.Welcome to our NEW feature—Letters to the Editor. Here, Daniel Lewi of @Tay_Sachs, asks 'How can we get the patient heard by the regulators?' Read at rarerevolutionmagazine.com/how-can-we-get… Write your own letter and email [email protected]. The max word count is 300 words.
Supporting Tay-Sachs and Sandhoff disease patients: Daniel Lewi, co-founder and CEO of @Tay_Sachs and his team develop an interactive digital toolkit, addressing knowledge gaps. Read article ➡ ow.ly/rYJ850QvncQ #RareDiseases #PatientSupport #HealthEducation
💜With profound sorrow, we announce the passing of our beloved CEO, Tess Harris, peacefully on March 1, 2024. A tireless advocate for PKD, her visionary leadership and dedication will forever inspire us.💜 Full statement: bit.ly/TessPKD
Supporting Tay-Sachs and Sandhoff disease patients: Daniel Lewi, co-founder and CEO of @Tay_Sachs and his team develop an interactive digital toolkit, addressing knowledge gaps. Read article ➡ ow.ly/rYJ850QvncQ #RareDiseases #PatientSupport #HealthEducation
And for my next adventure…Really honoured and delighted to join the fabulous team @CPMOxford Exciting times ahead! #PersonalisedMedicine #PrecisionMedicine
We are pleased to introduce you to our newest team member, @AliMakesHay, who joins the CPM as our new Junior Research Fellow! You can find out more about Ali and her research in the vlog she did with @katherineawood9 last year: youtu.be/euLqW7c33Uc Welcome to the team Ali!
Are you affected by #RareDisease? Our #60SecondsOfRARE campaign could be for you. If you'd like to get involved and be a voice for your RARE community, email Becky at [email protected]. We can't wait to hear from you!
On our next Charity Partner spotlight - CATS Foundation. The Cure & Action for Tay-Sachs (CATS) Foundation (@Tay_Sachs) is the only charity based in the UK dedicated to supporting those affected by #TaySachs and #Sandhoff disease. Find out more: cats-foundation.org
#ThrowbackThursday: this week, our #CEOSeries reshare is Daniel Lewi from CATS Foundation. When Daniel's daughter was diagnosed with #TaySachs, he set up @Tay_Sachs, along with his wife. Read here: bit.ly/42zdUMH
The European Health Data Space (EHDS) - just a buzzword? Tune in to episode 7 of #EurordisRareOnAir for a full breakdown of how the EHDS could impact your care. 🔗 go.eurordis.org/0AhtQC Already listened? 👂 Leave us a review!
From how patients can engage with @EMA_News, to Patient Generated Data, Genome editing and Health Technology Assessment, it has been another enlightening day here at #OpenAcademy2023! #EURORDISOpenAcademy
June is a very happening month in our household. New job on cardio project, big birthday, and a 50K running challenge for @MDUK_News Send donuts 🍩 because I’m going to need them!! Good job it’s long days ☀️
When Daniel Lewi’s daughter was diagnosed with Tay-Sachs, he discovered there was no dedicated UK charity offering support to families such as his, and so along with his wife, set up The CATS Foundation. He talks about the incredible support network @Tay_Sachs has created & more:
Keeping with the theme of #bigcatsawarenessweek we are sharing the inspiring #CEOseries from @Tay_Sachs Daniel Lewi. bit.ly/CEOLewi 🦁 #thecatsfoundation #charity #community
🏆 @RCTofficiel become the 5th team to lift both the #ChallengeCupRugby trophy and the #HeinekenChampionsCup 🏆
Thanks to speakers Baroness Pauline Neville-Jones @DHSCgovuk @GenePeopleUK @SirMCaulfield @willrhevans @SirMCaulfield @SMA_UK_ @derm_scientist @Tay_Sachs @mendelian_co @UniofExeter @IQVIA_UK @GenomicsEngland @DavidRamCFT @DavidRamCFT & attendees for joining #WHFEvents!
Well that was a busy W/E 🤪Driving cross-country always yuck but worth it to spend time w/family whose fancy dress game is strong! Can’t unsee my SIL as The Tiger King!
As researcher (genomics) & patient advocate (rare disease), I think understanding is vital for informed decisions but how often is understanding not achieved? How do we improve this? Study👇by @louise_oni & others investigated patient information leaflets. #health #healthLiteracy
Please stop n read our latest paper in @SpringerNature This is so important nature.com/articles/s4139… We must pitch patient information leaflets so they are accessible for all Reimagine research
Wow 12K views of our paper in less than a day…I guess we hit an unmet need @Pharmaforkids Reimagining research
Please stop n read our latest paper in @SpringerNature This is so important nature.com/articles/s4139… We must pitch patient information leaflets so they are accessible for all Reimagine research
Please stop n read our latest paper in @SpringerNature This is so important nature.com/articles/s4139… We must pitch patient information leaflets so they are accessible for all Reimagine research
@Tay_Sachs CATS Foundation – Reimagining patient support in a post-COVID landscape. While many have returned to business as usual, some organisations are harnessing the benefit that this wrap-around virtual connection can provide. bit.ly/Reimagining-Pa… #RareDisease #Advocacy
With all the coverage of #londonmarathon2023 am reminded of total legend that is @AndynBrown16 who ran for our son Bertie 🤩🥇He literally eats determination for breakfast because he is also very busy dad, husband, school governor & professional. #Thankful #MDUK
Trends for United States
You might like
