Cystinosis Network Europe

Cystinosis Support Network Europe is an umbrella grouping of patient support, advocacy and research organisations in Europe and beyond.

[Cystinosis Network Europe @CystinosisE]

It's #RareDiseaseDay2024 and we are excited to release the agenda for the International #Cystinosis Conference in July, in Manchester, hosted by @CystinosisUK . You can find the agenda and register at https://t.co/eiTF33dfRu. Look forward to seeinyou there!

[Cystinosis Network Europe @CystinosisE]

Huge congratulations to Prof Dr Elena Levtchenko on her inaugural lecture as part of the Pediatric Nephrology Team of Emma Children’s Hospital, Amsterdam UMC. We are proud to have her as a friend and colleague and send best wishes for her new endeavours.

[Cystinosis Ireland @CystinosisIrl]

Jean Campbell moderating a touching&fascinating panel w/ Dr Jess Thoene, Marybeth Krummenacker & Dr Bill Gahl "Finding our Roots" & how far the #cystinosis community has come. Dr Thoene remembered his first patient treated w/cystaemine therapy who responded well💙💛 #CRNnashville

[Cystinosis CRN @CystinosisCRN]

Packed house this morning at #CRNnashville being led by CRN President, Jonathan Dicks.

#cystinosis #RareDisease #welcome

[Cystinosis CRN @CystinosisCRN]

Q&A with Dr Cherqui and Jordan Janz.

#CRNnashville #cystinosis

[Cystinosis CRN @CystinosisCRN]

Stem cell gene therapy for cystinosis: updated clinical trial results with Dr Cherqui.

#CRNnashville #cystinosis #research

[Cystinosis Network Europe @CystinosisE]

Denise Dunne, CNE co-ordinator, at #CRNnashville giving an update on the work of CNE and our Community Advisory Board which works with sponsor of #Cystinosis #research to deliver better outcomes for #raredisease patients (she usually has her eyes open when working 😳)

[Cystinosis CRN @CystinosisCRN]

#CRNnashville kicked off today with the scientific symposium. Topics included "A non-orphan use for an orphan drug: Cysteamine for SARS-CoV-2" with Dr Thoene and "Development of neuromarkers in cystinosis" from Dr Foxe.
#cystinosis #RareDisease #research

[Cystinosis Network Europe @CystinosisE]

Delighted to have a poster abstract st the #CRNnashville conference. It explains the work of our #Cystinosis Community Advisory Board. Find out more at https://t.co/Xh72ch5BNu @CystinosisCRN @CystinosisIrl @CystinosisUK @CystinoseDtl

[Cystinosis Network Europe @CystinosisE]

It's #cystinosis Awareness Day! The 5.7kb deletion is one of the most common genetic mutations for people with cystinosis, so we use 5/7 to raise awareness of our community. Delighted to mark the day by launching our revamped website https://t.co/DpbLp70Xq6 #raredisease #research

[Cystinosis Network Europe @CystinosisE]

Phew...a busy day today for the Worldwide Cystinosis Community Advisory Board! A full day of meetings discussing issues of importance to our global community. And an ice cream 🍦 More to come tomorrow. #Cystinosis #Research #healthresearchmatters

[Will Newman @willgnew]

Top story: @KIReports: 'T17/ These cases highlight the importance and need for more studies looking at cystinosis, renal disease, and pregnancy in order to provide more insight. ', see more https://t.co/6X0FQJCIbA

[Will Newman @willgnew]

Top story: Video on Twitter, see more https://t.co/6X0FQJCIbA

[Will Newman @willgnew]

Top story: Expert guidance on the multidisciplinary management of cystinosis in adolescent and adult patients | Clinical Kidney Journal | Oxford Academic https://t.co/lZaqn32Jn4, see more https://t.co/6X0FQJCIbA

[Cystinosis Ireland @CystinosisIrl]

Cystinosis Ireland is delighted to have 2 projects co-funded through this scheme🔬🧪Dr Jennifer Hollywood & Prof Elena Levtchenko,their collaborators & teams will be undertaking really important work aiming to improve the lives of people with cystinosis👏. https://t.co/D8U3WnwTbu

[Health Research Charities Ireland - HRCI @HRCIreland]

It's been a really positive week in the HRCI office as we celebrate the success of our member charities in the HRCI/HRB Joint Funding Scheme. In case you missed the announcement, you can find all the successfully funded projects here https://t.co/Xwjx2JVo8M #HealthResearchMatters

[Cystinosis Ireland @CystinosisIrl]

If you are an adult living with cystinosis in Ireland we would love to hear from you!
We have recently put a group of adults living in Ireland in touch with each other.
If you have #cystinosis, live here & would like to know more, message us or e-mail us on [email protected]

[Prof AJ McKnight @a_j_mcknight]

Want to help write a book? Calling young people aged 4-11 years with a rare condition. We want your help to write a story - everyone is different 👍. #RareDiseaseNI @NI_RDP @CPH_QUB #RARDTAC #book #RareDisease. @AshleenCrowe @LongmoreKerry @cindymc44436528

[Cystinosis CRN @CystinosisCRN]

Dates and venue announced!
The 2023 CRN Family Conferece is July 13 - 15 in Nashville, Tennessee. Mark your calendars and check back for details.
https://t.co/LSI9Bx4ZE2 @visitmusiccity #cystinosis #conference #raregathering

[Cystinosis Network Europe @CystinosisE]

After the success of the CNE International Conference in July, we are delighted that recordings of the presentations & sessions can be found on https://t.co/3U6DMQfLdM. Please spread the word to your #cystinosis network! @CystinosisCRN @CystinoseDtl @CystinosisIrl @CystinosisUK