Do you have #cystinuria ? Check out our forum ‘Cystinuria Support’ on @HealthUnlocked - https://t.co/0BZnvBks5w - Lots of interesting questions and discussions. Building an international network and connecting patients with a #RareDisease - @rarediseaseuk @eurordis @EuRefNetwork

Cool to hear #CystinuriaStones story from Kay Thomas & @MattBultitude for @GuysUrology's #FridayMorningMeeting on the "Good to Great" theme •2008-25 •n=280 referrals •specialist uro-radiol for USS •tightly monitored alkalinisation •bespoke website https://t.co/XxFqRxYyEL

Interesting new insights into #cystinuria research earlier from Richard Coward and @Dakhakhini - whose PhD is analysing potential drugs for the most common UK mutation targeting receptor protein in proximal tubule.

Fabulous #Cystinuria patient day in Newcastle. First one since 2019. Fabulous interactive audience of patients/relatives. Thanks to the faculty: @johnasayer @SMoochhala @MattBultitude @Dakhakhini Kay Thomas Richard Coward, and patient speakers @rarediseaseuk #RaDaR @UKKidney

… and in this family SLC7A9 heterozygote - likely autosomal dominant inheritance #Cystinuria

#Cystinuria patient day. @johnasayer explaining genetic family trees for audience members … in this case, SLC3A1 autosomal recessive disease.

“The Salt Quiz” …. Fascinating learning about salt content in foods. Quite shocking compared to the daily recommended amount = 5-6g. #Cystinuria Patient Day

Breakout session on ‘diet and #cystinuria’ from specialist renal dietician. Healthy eating; low salt (5g/ day); low animal protein; adequate protein; plant based diets ?

The team from @GSTTnhs facilitating a session on surgical options for #cystinuria. Stimulating great discussions within the room about coping with colic symptoms ranging from exercise, cold water therapy, beer(!!) or medication? @Kidney_Research @CystinuriaUK #expertpayient

Discussing the medication strategies for #Cystinuria @SMoochhala Issues with medications and in particular tiopronin - a real issue in the UK with supply, cost and availability, Really does have a clinical impact. Slow progress from @NHSEngland and commissioning

#Cystinuira Patient Day - introduction by @johnasayer . Already a very interactive audience ! Wide range of age of first stone, diagnosis with cystinuria, and lots of questions. Thanks to @Kidney_Research for the support

Looking forward to the National #Cystinuria Patient Day tomorrow. A great chance for patients and their relatives to get up-to-date information, network and meet each other. @rarediseaseuk #RaDaR @UKKidney @johnasayer @SMoochhala @MattBultitude https://t.co/a0eWmjBI4J

RT-ing to raise awareness for #RareDisease on International Rare Disease Day - rare diseases affect 300 million people worldwide. Promoting equity of access for medications/ treatments and research worldwide. #RareDiseaseDay @rarediseaseuk @CheckOrphan

#Cystinuria is a rare form of kidney stones which leads to recurrent lifelong stone formation. #RareDiseaseDay More patient information/ forum can be found here: Web: https://t.co/3uhsJb4cMi Forum: https://t.co/0BZnvBkZV4 #CareForRare @rarediseaseuk

Use of tiopronin and penicillamine in cystinuira. Kay Thomas presenting our data @GuysUrology on use in #cystinuria - major cost issues esp. with tiopronin; switching agent often works (tolerated) even when cessation due to severe side-effects #BAUS22 @CystinuriaUK

Cystinuria Awareness Day - I’ll raise a glass (or 12 of water) to that #cystinuria

#WorldKidneyDay today and a special mention to all #cystinuria patients who cope so no amazing well with their recurrent stone problems. Hoping for better access to meds and novel treatments in the future. @weddellite @rarediseaseuk @specialkathomas

For more information and resources on #cystinuria check out: Website: https://t.co/w5fxVvW6JK Forum for patients and families: https://t.co/0BZnvBks5w #WorldKidneyDay

On #WorldKidneyDay tips for looking after your kidneys and preventing #cystinuria kidney stones: 1) Minimum 3-4 litre fluid intake/day. Check urinary volume >2-3L 2) Maintain normal weight 3) Low salt diet 4) Limit animal protein; mixed varied diet 5) Adherance with medications

@mohamed92902484 @EndoLuminalEndo @saadwael738gma1 @drkemalsarica @so_uro @MattBultitude @SIU_urology At Guy's in UK they have a cystinuria clinic and their website has amazing resources. I think @MattBultitude et al. Run that clinic, surely they can give useful tips https://t.co/VTrFmJooN5

New article in @JELEU_DPG showing experience of #cystinuria patients in #COVID period. Issues with who needs to shield; frequent problems with obtaining medication; 40% reported pain or stone episode with >50% anxious to attend ED @GuysUrology @GSTTnhs https://t.co/wMalPrWy8b