Cystinose-Selbsthilfe e.V.

gegründet 1991

[Cystinose-Selbsthilfe e.V. @CystinoseDtl]

@EuRefNetwork @eurordis What a nice idea! Wishing you a good time. 😃I am on my way to cystinosis international meeting in Manchester. 👍

[Cystinose-Selbsthilfe e.V. @CystinoseDtl]

@EuRefNetwork 😥❤

[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!

[Cystinose-Selbsthilfe e.V. @CystinoseDtl]

@ern_reconnet @CongressoSir @iaiaraia @DianaMarinello Good to see both of you!! Warm regards, Claudia

[Cystinose-Selbsthilfe e.V. @CystinoseDtl]

@EuRefNetwork Sehr schön - alle fleißig! Johana R. und Claudia S. have been at NAKSE conference in Germany discussing Orphan drugs, translation ERN to DRN andnewbornscreening and a lot of other topics with 278 other experts in RD. 👍

[Cystinose-Selbsthilfe e.V. @CystinoseDtl]

DANKE!!!! für Eure großartige Unterstützung bisher - wir sind noch lange nicht am Ziel, aber es ist wunderbar, so viel Zuspruch zu bekommen!😃👍

https://t.co/dvWPUlr0sv via @betterplace_org

[EURORDIS-Rare Diseases Europe @eurordis]

Have you taken our access campaign questionnaire yet? ❎

👉 https://t.co/2czi6xbnwC

Now available in 19 European languages! 🌐📝

Already taken it? Share it with your network! 🙋

[Will Newman @willgnew]

SAVE THE DATE
The 2024 CNE International Cystinosis Conference will be hosted by @CystinosisUK in Manchester, England. Scientific meeting on 25th July followed by family meeting on 26th and 27th July. https://t.co/6UOeNtepUn

[Energy Conect⚡️ @energyconect4]

Espectacular pintura que da ilusión de estar cortado el árbol.
📹: Artista: Howard Lee
Síguenos en Energy Conect 🚀

[Cystinose-Selbsthilfe e.V. @CystinoseDtl]

Es geht los - alles ist verbereitet!
5.-7.5.2023 Cystinose-Familienkonferenz in Fulda,
Jahreshauptversammlung Cystinose-Selbsthilfe e.V. ,
Nachtwächterführung, Lasertag- Spiel, Spaß und mengenweise Informationen!
https://t.co/vxPbMqkCw3

[Cystinose-Selbsthilfe e.V. @CystinoseDtl]

@CystinosisE @CystinosisCRN @CystinosisUK @CystinosisIrl Hope to see some Germans there -it is not that far to go to Leuven 😀

[Cystinosis Network Europe @CystinosisE]

Have you registered for the CNE Int'l Conference? Closing date soon! Research & Paramedical meetings on 7 July, Family Conference 8-10 July. 7 language translation! Visit https://t.co/egrsXEy50i to register & see the agenda - you can learn & meet others living with #cystinosis

[CKJ @CKJsocial]

🆕Expert guidance on the multidisciplinary management of cystinosis in adolescent & adult patients
🆓https://t.co/e1WUxW3ymK
👉recommendations & a checklist for clinicians with a vision for improving & standardising the multidisciplinary care for patients with cystinosis

[Cystinosis Research @NataliesWish]

Today Natalie’s wish is finally coming true. In 2003, Natalie Stack made a wish that inspired a movement to cure cystinosis. And today we have come full circle. Today, Natalie Stack officially became the 5th PATIENT and first female in the stem cell & gene therapy clinical trial!

[Cystinose-Selbsthilfe e.V. @CystinoseDtl]

For more information: https://t.co/jkk84TGjJv Information in 6 languages available.

[Pediatric Nephrology @Ped_Neph]

A greater understanding of the caregiver experience is necessary to better support family-centered care surrounding dialysis initiation. Read this Original Article - an analysis of data from a qualitative study of caregivers of children on dialysis.
https://t.co/yxyr40IDsH

[EURORDIS-Rare Diseases Europe @eurordis]

And the EURORDIS Scientific Award goes to… 🥁

Prof. Franz Schaefer! 🏆 We celebrate his contribution to key advancements in the field of rare kidney diseases, paediatric nephrology, and hypertension.

👉 https://t.co/8SiIjavJgD

[@ERN_RND 🧠 @ERN_RND]

Does your department already have an ERN-RND poster up on their wall?

Thank you Anna Sulek (Institute of Psychiatry and Neurology in Warsaw, Poland) for promoting the ERN-RND and our Short Exchange Programme in your institute!

https://t.co/EBAfZCZd4V

[Cystinosis CRN @CystinosisCRN]

This Saturday the Adult Leadership Advisory Board (ALAB) hosts a live discussion on alternative therapies, exercise & activities. Here's how to join: https://t.co/DeJw0tS4qx #adults #voice #discussion #share #support #cystinosis @Cystinosis79 @LLunacy