European Sickle Cell Federation @escfederation
Brussels, Belgium Joined February 2020-
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Thank you to our PLATINUM SPONSOR @PfizerInc for our recent ESCF International SCD Summit 2024 held in Dublin, Ireland. Your support enabled patients to share their lived experiences, patient education, support, networking & engagement with health care professionals. Thank you!!
Session One! A Dialogue of patients and carers lived experiences!!! Thursday 27th June 2024 Time: 16.00pm GMT Join us in person or online. Register in advance to secure your spot at escfederation.eu/register
Introducing our Platinum Sponsor ✨️ Thank you @pfizer for your support towards #sicklecelldisease & #patienteducation Here is to the first ever International conference on Sickle Cell Disease in the Republic of Ireland organised by Patients & Patient Advocates.
This 19th June we remain committed to changing the myths & perceptions surrounding the racial structure of #Sicklecelldisease genetic prevalence! Sickle Cell is NOT a black people's disease! Join us by sharing this message widely. Together we are Stronger!
FINALLY! Some great news as the struggle to keep Voxelotor in the UK 🇬🇧 is ovee. Now, the rest of Europe waits! theguardian.com/society/articl…
Back for another great patient focused experience together with great clinical experts. This is an in person event. Registration opening soon. SAVE THE DATE!!
Super excited to see this!! Thank you Diane for choosing #Sicklecell. There is nearly no research on Sickle Cell Disease in Ireland. This means alot to us!! Thank you!!! @escfederation @ERNEuroBloodNet @SCTIreland @mhaireland @PPI_Ignite_Net
Professional PhD scholar @RCSI_Irl & pharmacist @TUS_ie - Diane Patterson shares her story of incorporating a friend & PPI Contributor in her approach to researching pain management for Sickle Cell Disease - a lifelong illness. #RCSIdiscover @PPI_Ignite_Net
#Breaking: The European Commission approves CRISPR/Cas9 gene-edited treatment, co-developed with Vertex Pharmaceuticals, for #SickleCellDisease and #BetaThalassemia for the European Union. Learn more: bit.ly/3IifYkR
This is a very important point. We need more specialist Heamatologists for Sickle Cell Disease on a global scale. We welcome the FDA approval, but we need them to be approved in Europe and equally accessible for everyone!! Thank you @ASH_hematology for a great conference!
The approval of two gene therapies last week represent a big step forward in SCD research, but it still won’t be enough for most people with #SickleCell. The problem: we need more hematologists. #ASH23 Read @DocksDoc200's piece in STAT: loom.ly/FYSWhB4. #ConquerSCD
The approval of two gene therapies last week represent a big step forward in SCD research, but it still won’t be enough for most people with #SickleCell. The problem: we need more hematologists. #ASH23 Read @DocksDoc200's piece in STAT: loom.ly/FYSWhB4. #ConquerSCD
#ASH23 is thé meeting where SCD is highly put on the agenda. Looking forward to continue this important way to go at #EHA24
Our COO @LoraRuthW is present at the #ASH23 Annual meeting. Europe is eager & ready to see advancements in Sickle Cell treatment options, disease management and improving involvement in Research and clinical trials.
CASGEVY is the 1st FDA-approved #geneediting treatment for #sicklecell. Using CRISPR, Exa-cel targets the BCL11A gene, boosting fetal hemoglobin to ease symptoms. While more dialogue is required on access & affordability, it's a notable milestone for #SCD. rb.gy/s54omc
Great session on how sickle cell disease centres can get ready to provide genetic therapies @ASH_hematology Interesting and exciting times are ahead!!
#Breaking: The U.S. FDA approves our treatment for #SickleCellDisease. We are excited to make this treatment available to patients. Learn more: news.vrtx.com/news-releases/…
Our COO @LoraRuthW is present at the #ASH23 Annual meeting. Europe is eager & ready to see advancements in Sickle Cell treatment options, disease management and improving involvement in Research and clinical trials.
The ASH Annual meeting 2023 is on! #ASH23. And it's a pool of knowledge, networking and clinical advancement for both Malignant & Non Malignant conditions!
Finally, a wave of great news as we celebrate the first regulatory authorisation of a CRISPR based gene editing therapy for #sicklecelldisease in the world! This is a new era for the Sickle Cell Community! Eagerly for approvals in extending this to the rest of Europe.
The importance of donating blood 🩸 Help us establishing healthcare pathways regardless your social status or ethnicity. Everyone deserve the chance to live. Donate blood, preserve life ! #changetherecords #appdh #ipst @escfederation @ERNEuroBloodNet
ASH @ASH_hematology
73K Followers 2K Following The American Society of Hematology (ASH) is the world's largest professional society concerned with the causes and treatments of blood disorders.
European Hematology A... @EHA_Hematology
33K Followers 431 Following Europe's largest hematology community | Connection • Education • Research • Advocacy • Patient Care | Join EHA today | #YoungEHA #HemaSphere #EHA2026
ERN EuroBloodNet @ERNEuroBloodNet
2K Followers 406 Following ERN-EuroBloodNet aims to improve healthcare and quality of life of patients with Rare Hematological Diseases. Funded by the European Union.
KCLredcell @KCLredcell
366 Followers 287 Following The official Twitter account of the Red Cell Hematology lab at King's College London!
Academy for Sickle Ce... @ascatconference
807 Followers 492 Following ASCAT improves the lives of people with Sickle Cell Disease and Thalassaemia by providing an educational platform for our community.
GenoMed4All @genomed4all
983 Followers 954 Following #H2020 project leveraging the power of #AI for #Genomics and Personalized Medicine in Haematological Diseases 🧬 Funded by the @EU_Commission 🇪🇺
Gautam Dongre NASCO @GN_Gautam
2K Followers 2K Following Secretary, National Alliance of Sickle Cell Organizations NASCO India. @IndiaNasco. Board Member of GASCDO @globalscdorgs Father of 2 SCD Children.
UEO Sickle Cell @UEOSickleCell
1K Followers 537 Following Supporting and empowering Kansas City families affected by sickle cell disease. MY CAUSE MY CLEATS: https://t.co/TiLIspFPOy
Sickle Cell Consortiu... @SCCConsortium
4K Followers 927 Following a collective of community-based organizations, patient-advocates, community partners and research/medical advisers.
EURORDIS-Rare Disease... @eurordis
31K Followers 1K 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.
Sickle Cell Awareness... @awareness_cell
2K Followers 3K Following Dr Dexter's/CEO-SickleCellFoundatio /Aware the people for sickle cell.(work for decrease SickleCell Birth & SCD Mother Mortality).Sicklestory#Writer#Blogger
David Beneitez, MD @beneitez_david
1K Followers 1K Following @Hemato_Vhebron / Red Blood Cell Disorders Unit / ERN-EuroBloodNet Center / Clinical confirmation unit of SCD newborn screening programme in Catalonia
Sick Cells @SickCells
3K Followers 629 Following Sick Cells’ mission is to elevate the voices of the SCD community and our stories of resilience.
Vertex Pharmaceutical... @VertexPharma
70K Followers 83 Following The official channel for Vertex Pharmaceuticals. https://t.co/RRKBue0r0B
Sickle Cell Care Manc... @sickle_caremcr
300 Followers 285 Following Sickle Cell Care Manchester supports people living with Sickle Cell Disease. We offer practical, emotional and befriending support and advocacy.
ASAFE @AsafeFalciforme
376 Followers 226 Following https://t.co/5ZfiIVZrgl Spanish Association of Sickle Cell Disease
Alexandra Power-Hays,... @DrPowerHays
3K Followers 2K Following Same username on Blue Sky. Find me there! Sickle Cell Doc & hematologist fighting for our pts, locally and globally 🌍
As One Foundation @AsOneFoundation
762 Followers 1K Following We educate to empower the global sickle cell population one family at a time.
PPI Ignite Network Ir... @PPI_Ignite_Net
2K Followers 115 Following A shared voice for Public and Patient Involvement in health and social care research in Ireland. Every voice matters.
HSE Research & Develo... @HSEResearch
4K Followers 3K Following Implementing the @HSElive Action Plan for Health Research 2019-2029 #ResearchEthics #ResearchGovernance #PPI for #EvidenceInformed Health & Social Care in 🇮🇪
HealthResearchBoard @hrbireland
14K Followers 979 Following Supporting research to improve people’s health and to enhance healthcare delivery. #ResearchEvidenceAction Community Guidelines: https://t.co/qkmJU21ToH
IPPOSI @IPPOSI
4K Followers 1K Following IPPOSI puts patient voices at the centre of healthcare & policy. Irish Platform for Patient Organisations, Science & Industry. Registered Charity: RCN: 20062934
CRISPR Therapeutics @CRISPRTX
24K Followers 0 Following
DreamsiCkle Kids Fdn @DreamsiCkleKids
1K Followers 3K Following 501(c)(3)#SickleCellAdvocates #MakeSickleCellPopular #Nevada #SickleCellFoundation #RareDiseaseAwareness
NHS Blood Donation �... @GiveBloodNHS
85K Followers 11K Following The official account for England's blood service. Monitored 8am-6pm Mon-Fri and 8am-3:30pm Sat-Sun. If your query is urgent, please call 0300 123 23 23.
NHS Blood+Transplant @NHSBT
24K Followers 655 Following NHS Blood and Transplant manages the national voluntary donation system for blood, plasma, tissues, organs and stem cells. Also @GiveBloodNHS and @NHSOrganDonor
Rudolph Walker CBE @RudolphWalkerDA
17K Followers 643 Following Working with fantastic people to empower our young people - @RWFoundation_
Julie Makani @juliemakani
10K Followers 6K Following Scientist|Doctor - Sickle Cell Disease. Biomedical Science in Africa. Health. Education. #Sicklecell Helpline 0769680688
Maria Wouters @Maria_Wou
19 Followers 125 Following Account Director @evoke_incisive. Passionate about EU 🇪🇺 #IAmEuropean 🇪🇺🇧🇪🇪🇸 Opinions are my own, RT ≠ endorsement
marissa cors @rissarys
159 Followers 323 Following Professional Patient-(noun) a person or individual with a chronic illness that has developed a specialized skillset of factual knowledge and coping strategies
The Sickle Cell Aware... @SCAFKenya
772 Followers 1K Following Kenya's first nonprofit health NGO dedicated to changing the lives of PLWSCD through provision of HEALTH, AWARENESS & HOPE. Call/Text/WhatsApp: +254(0)726931076
Quintissa S. Peake @Q_S_P
729 Followers 3K Following Sienna, Kynedi & Alyvia’s auntie, God's child, coalminers granddaughter, UK Alum, Sickle Cell Survivor, blood recipient, VO artist, & all around go-getter!
BGS Transfusion @BGSTransfusion
285 Followers 250 Following BGS Transfusion is a high quality Blood Transfusion conference aimed at Biomedical, Medical and Transfusion Practitioner grade staff.
Udit Narayan Padhi @PadhiUdit
94 Followers 46 Following CSIR NET, DBT JRF, ICMR JRF, GATE, Lecturer in Zoology (SSB )Higher Education Department, Odisha
Tackle Sickle Cell Af... @TackleSickle
493 Followers 276 Following We're a registered non-profit, holistically fighting Sickle Cell Disease in rural Africa. Contact us: ☎️:+256 786 241 344 📧: [email protected]
Cayenne Wellness @CayenneWellness
749 Followers 925 Following Improving nutritional & mental health through education, research, awareness initiatives & more. For more info, please visit: https://t.co/ABtCwWDRFx
May5Foundation @may5foundation
476 Followers 111 Following The May5Foundation and founder Dr.Alexia Mays are committed to supporting the communities of sickle cell, grief & loss, thru research ,advocacy &awareness
THE SICKLE CELL SUPPO... @SupporUnit
37 Followers 433 Following A community-based organization established to improve the lives of people with and afflicted by sickle cell disease through knowledge, skills, and advocacy.
Elle Cole (She/her) @Cleverlychangin
10K Followers 9K Following International best-selling (13X) author Speaker & advocate for #sicklecelldisease Producer & #CleverlyChangingPodcast Host 💌 [email protected]
GANSID @IBloodDisorders
130 Followers 56 Following
SickleCellMN @SickleCellMN
2K Followers 2K Following Improving quality of life for individuals and communities affected by sickle cell disease. *We do not monitor this inbox.
Marilyn Burton @MarilynMSCTC
22 Followers 58 Following Service Manager for the Manchester Sickle Cell & Thalassaemia Centre. RGN,RM
Itsinmyblood @Itsinmyblood92
675 Followers 359 Following Ana Cristina Tejada MD Hematology fellow from Guatemala 📍Monterrey Mx 🇲🇽 UANL
EritroEspaña Rare An... @AnemiaSEHOPSEHH
253 Followers 160 Following Eritropatología SEHOP-SEHH #REHem #Registro español anemias raras
Ursula von der Leyen @vonderleyen
1.7M Followers 278 Following President of the @EU_Commission. Mother of seven. Brussels-born. European by heart. 🇪🇺
RAiN @RAiNAllIreland
452 Followers 465 Following All-Ireland Rare Disease Inter-Disciplinary Network. Working collaboratively to create a positive impact for individuals with Rare Diseases and their families.
Dr. Nina @nfayanders
749 Followers 894 Following Holistic Health Practitioner. Sickle Cell Expert. Producer of TOVA Tuesday Podcast. #PrimarySpecialtyCare #Research #Outreach
Solange Malisa da Gra... @SalvaterraPinto
3 Followers 21 Following
kwasi danson @kwasi_danson
20 Followers 287 Following Just straight forward, flexible, fun...and looooves blue
blessing olagundoye o... @BlessingOlasan1
58 Followers 268 Following I am a Sickle cell warrior Sickle cell advocate
Health Research Chari... @HRCIreland
4K Followers 2K Following National umbrella org supporting 45+ charities active in health, medical & social care research. Also run the Irish Health Research Forum. Charity No. 20052973
national thalassemia ... @nationalthalas1
882 Followers 2K Following Thalassemia challengers deserve normal life. Donate blood, be happy, stay healthy , live n help others live.
Deirdre Ryan @thatdeirdreryan
438 Followers 1K Following Pain patient and President of Pain Alliance Europe. Full time cat butler.
Corey Baysden @CoreyBaysden
5K Followers 5K Following #RareDisease mom to Saylor w/ #Syngap1 🧬 Director of Community Activation @cureSYNGAP1 🧠Working 2 find a cure for #epilepsy #autism #hypotonia #nonverbal #ID
gmcrotty @gmcrotty
26K Followers 29K Following Blood doctor (consultant haematologist). https://t.co/gDOLTsUPvV Past President of IHCA. Personal views. Retweets are not endorsements. #QI
John Joseph Strouse @dukesickle
1K Followers 660 Following Adult and pediatric hematologist, sickle cell provider and advocate
Delisa O’Brien @MaybeItsDelisa
169 Followers 240 Following Living, learning, and evolving with Sickle Cell Anemia | Working in healthcare communications | she/her
Ashley S. Evans @SYNGAP1mom
5K Followers 4K Following Investor Francisco Partners Board @payscale @thisisgslate @litmos @SourceScrub @ZoomInfo Alum @OneCarlyle & @MorganStanley Founder @cureSYNGAP1 #SYNGAP1 🧬
Ziagnosis @ziagnosislab
125 Followers 689 Following Ziagnosis Labs | Founded by AIIMS Alumni | NABL & CGHS / Ayushman CAPF Empanelled | Affordable, Reliable Diagnostics | Doorstep Healthcare | Telemedicine |
ARISE @ARISE_EUproject
177 Followers 32 Following ARISE is a project enhancing SCD research and care via staff exchange and is funded from the EU’s H2020 R&I programme under the MSCA GA No 824021You might like
