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 EDSAwarenessIreland NIRDP Sickle Cell &Tha Irl Alpha-1 Foundation Ireland Cystinosis Ireland Irish Haemochromatosis Association Edwina Wrenn O'Connell Dravet Syndrome Ireland Irish MPS society PKU Association IE SWAN Ireland AngelmanSyndrome Dystonia Ireland Marfan Ireland 🇮🇪 Prader-Willi Ireland Pituitary Ireland MuscularDystrophyIRE RARE Ireland 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!!!
European Sickle Cell Federation ERN EuroBloodNet Sickle Cell &Tha Irl Migrant Health Alliance Ireland PPI Ignite Network Ireland

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 World Health Organization (WHO) Collaborating Center at our #ParticipatoryHealthResearch Unit University Of Limerick was delighted to discuss research emerging from our Department of Health refugee & migrant partnership at event yesterday including HSE Ireland HSE Social Inclusion Ahmed Doras Cairde Ireland Sickle Cell &Tha Irl Health Research Charities Ireland - HRCI

📢ERN EuroBloodNet & The Lancet Haematology
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 ASCAT founder Baba Inusa & ERN EuroBloodNet. 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 for making this a success👏🏾. #redcells4sickle #changetherecords
#giveblood #savelives

Great event last night Sickle Cell &Tha Irl organized by Lora Ruth Wogu amazing performance by our very own Justine Nantale Justine 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 Children's Health Foundation research into the disease which causes severe symptoms in children such as delayed growth, stroke and life-long organ damage.
🔗 See: bit.ly/443Gjf8
Sickle Cell &Tha Irl

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🩸

Today we celebrate all the patients and families affected by #sicklecelldisease . We call upon all communities to join us in Unity and Togetherness to advocate & fight for better services, more treatment options & the elimination of the Stigma sorrounding SCD.
#WorldSickleCellDay .

Fascinating to hear perspectives on what ‘representation’ means in context of PPI research. Brilliant observations from Avril Kennan 🌍 Health Research Charities Ireland - HRCI Michael Foley Prof Ailish Hannigan UL School of Medicine Lora Ruth Wogu Sickle Cell &Tha Irl Migrants Health Alliance Ireland & Stacey Grealis UCD Rheumatology 👏

Thank you! Mary

Absolute pleasure to be able to speak about #Sicklecelldisease and the work of Sickle Cell &Tha Irl. Thank you Mary for having me.
We look forward to welcoming many of you to our Annual Charity Gala Extravaganza 2023!
Limited tickets available on link below;
eventbrite.ie/e/break-the-si…

Here to learn and to represent #sicklecell patients as a member of European Sickle Cell Federation
Delighted to have received VIP sponsorship from European Hematology Association for this great, huge #EHA2023 conference of the year!.