Sickle Cell &Tha Irl

Thank you @linkedin for inviting, partnering, & supporting Sickle Cell& @giveblood.ie for a talk on Sickle Cell Disease, the Importance of blood donation, the need for more blood donors . Thanks to Axelle & the Black Inclusion Group for the blood drive at IBTS offices in Dublin

September is here! And the focus is on raising awareness of the importance of; blood donation, newborn screening, advancement in treatment options for Sickle Cell Disease. Join us to donate, fundraise or organize a blood drive. Contact us via; Email: info@sicklecellireland.ie

Today is World Sickle Cell Day 🩸 Our specialist sickle cell nursing team will be in the hospital concourse until lunchtime today raising awareness for sickle cell disease and encouraging you to give blood when you can 💉 Pop on down to have a chat with the team 💬

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!

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

@22Q11_Ireland @EDSIreland @NI_RDP @SCTIreland @Alpha1_Ireland @CystinosisIrl @IrishHaemAssoc @MsEdwina @Dravet_Ireland @Irishmpssociety @PKU_Ireland @IrelandSwan @AngelmanIRE @DystoniaIreland @MarfanIreland @PWSAI @pituitaryirela1 @MDI_Ireland @rareireland @TSC_Ireland

Approaching midpoint of #GetRareAware campaign -we must increase number of #RareDiseases in newborn screening. Thanks to our many supporters that are on this journey with us... If you want to #GetRareAware register to join a webinar and take action getrareaware.ie

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…

13 years of Advocacy, education & awareness, patient & parent support, improvement in health policy for #sicklecell & much more! All without any government funding!! We are thankful for the support & donations received over the years.

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

We've launched a new online survey to get your ideas for a national action plan to eliminate #cervicalcancer in Ireland. We can make cervical cancer rare and you can help make it happen. Take the survey now: tinyurl.com/cce-survey-mak… #TogetherTowardsElimination #HPVAwarenessDay

The @WHO Collaborating Center at our #ParticipatoryHealthResearch Unit @UL was delighted to discuss research emerging from our @roinnslainte refugee & migrant partnership at event yesterday including @HSELive @HSE_SI @Ahmed_Lim1 @DorasIRL @CairdeIreland @SCTIreland @HRCIreland

📢@ERNEuroBloodNet & @TheLancetHaem during the 4th patient session of the 2nd #ASCAT2023's day: working together to gather & improve the outcomes of #SickleCellDisease patients! Contribute to the mapping: ec.europa.eu/eusurvey/runne… #ERNs #ERNeu #HealthUnion #EU4Health #ShareCareCure

Some really great points of concern raised here. But at this stage we are tired if seeing written research and would like to see more actions and positive impact on the lives of patients with #Sicklecell and indeed other #rare diseases. Thanks alot Anne for sharing with me! :))

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!

O YES! Our first official blood donation from one of our very own Irish-born son of the Island from #African #Heritage donating his first unit of blood today Thank you IBTS team @Giveblood_ie for making this a success👏🏾. #redcells4sickle #changetherecords #giveblood #savelives

@LGKAKIIKI @LoraRuthW @j_nantale Thank you

Great event last night @SCTIreland organized by @LoraRuthW amazing performance by our very own Justine Nantale @j_nantale and & amazing Rachel.The event focused on the need for more outreach and education around Sickle cell disease. More community engagement and funding needed RT

Today is #WorldSickleCellDay. The INTO raised nearly €68k through the Members’ Draw in aid of @CHFIreland research into the disease which causes severe symptoms in children such as delayed growth, stroke and life-long organ damage. 🔗 See: bit.ly/443Gjf8 @SCTIreland

Power in Unity, Power in Numbers! We highlight the crucial need for more blood donations among people of #African heritage to improve the treatment of SCD pts in Europe. Let's work together to #changetherecords by donating blood today! Join US by sharing the theme. WSCD2023🩸