Brussels, Belgium
Joined February 2020
- Tweets351
- Following209
- Followers392
- Likes507
Pinned Tweet
Save this Date!!
Our International Sickle Cell Disease Summit is coming up this June 27th-29 2024. Registration open escfederation.eu/register
The perfect place to be among patients, clinicians and industry
Join us for a great information and networking experience.
#ESCFSummit24
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!
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…
Back for another great patient focused experience together with great clinical experts.
This is an in person event. Registration opening soon.
SAVE THE DATE!!
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
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
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/…
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.
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
