Brussels, Belgium
Joined February 2020
- Tweets351
- Following209
- Followers392
- Likes507
European Sickle Cell Federation retweeted
FINALLY! Some great news as the struggle to keep Voxelotor in the UK 🇬🇧 is ovee. Now, the rest of Europe waits!
theguardian.com/society/arti…
European Sickle Cell Federation retweeted
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
European Sickle Cell Federation retweeted
#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
European Sickle Cell Federation retweeted
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
European Sickle Cell Federation retweeted
#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.
European Sickle Cell Federation retweeted
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
European Sickle Cell Federation retweeted
Great session on how sickle cell disease centres can get ready to provide genetic therapies @ASH_hematology
Interesting and exciting times are ahead!!
European Sickle Cell Federation retweeted
#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/…
European Sickle Cell Federation retweeted
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 – at Coimbra, Portugal
European Sickle Cell Federation retweeted
We’re committed to the #SickleCell community in everything we do – during #SickleCellAwarenessMonth & beyond. Beyond our science, we’re working with Sickle Cell Warriors, caregivers & physicians to empower meaningful change. Learn more our commitment: vrtx.com/stories/we-are-you-…
European Sickle Cell Federation retweeted
Excellent work team!
European Sickle Cell Federation retweeted
Another great conference not to be missed! This one is extremely special as it focuses entirely on #Sicklecelldisease and #Thalassaemia. Thanks to @ascatconference founder @PdbInusa & @ERNEuroBloodNet. Patients are given the opportunity to share and be involved properly!
European Sickle Cell Federation retweeted
Today is #WorldSickleCellDay and the @thalassaemiaTIF stands in solidarity with individuals and families affected by & living with #sicklecell disease (#SCD) everywhere in the world!
⭕ bit.ly/43Jglha
@globalscdorgs @SCDAAorg @SickleCellUK @escfederation @SickleCellNg
European Sickle Cell Federation retweeted
We hope you will join us for the 2-23 WSCD 24-hour Sickle-Cell-A-thon from 12 am EST to 11:59pm EST. Register at tinyurl.com/wscd23
#WorldSickleCellDay #wscd23 #sicklecelldisease
European Sickle Cell Federation retweeted
🎉TODAY STARTS THE #EHA2023!!! Do not forget to visit the @ERNEuroBloodNet booth at the collaboration plaza. More details:
eurobloodnet.eu/news/465/the…
#ERNeu #HealthUnion #EU4Health #ShareCareCure #ERNs
European Sickle Cell Federation retweeted
Here to learn and to represent #sicklecell patients as a member of @escfederation
Delighted to have received VIP sponsorship from @EHA_Hematology for this great, huge #EHA2023 conference of the year!.
European Sickle Cell Federation retweeted
The annual Sickle Cell charity fundraising gala is back! Join us as we learn, share, network and fundraiser for our very important & crucial patient support projects. Thankfull for the support from @escfederation
Link for tickets here;
eventbrite.ie/e/break-the-si…
European Sickle Cell Federation retweeted
Our members @pnhaacontact and #PNHUkraine presented #patientperspectives on #PNH at #europeanparliament today: faster #diagnosis via #education, #equity of care & treatment, measurement of relevant #QoL; support for independent #registries; recognition of #patient advocacy
European Sickle Cell Federation retweeted
Officially launched "All Ireland Rare Disease Inter-Disciplinary Research Network (RAiN) to bring together a broad range of interdisciplinary professionals interested in #RareDiseases #research to enhance knowledge and ease the burden of PLWRD. @LeoVaradkar @SimonHarrisTD
ALT We are delighted to receive the Shared Island strand of the New Foundations programme to develop partnerships between North/South on the island of Ireland #RAiNAllireland #Raredisease #Interdisiplinary #Research #Netwrok. Rare diseases are individually unique, but collectively they share substantial unmet health and social care needs. #RAREASONE
European Sickle Cell Federation retweeted
Today at 5pm CET
📢Have you blocked your calendar for the 1st session of the #ENROL webinar for patients?
- 🗓️ Next Wednesday, Feb. 15 at 5 pm CET
- 🗣️: @mmanupe & @LorisBrunetta
➡️Registry: eurobloodnet.eu/education-2/…
#ERNeu #ERNs #ShareCareCure #HealthUnion #EU4Health
