#KidneyPatients: We need your help! The #KidneyHealthInitiative is distributing a patient survey on innovative alternatives to #dialysis for the upcoming #rrtroadmap. You can take this important survey here: bit.ly/2njNhu2 American Association of Kidney Patients National Kidney Foundation Home Dialyzors News

SONG is conducting an international survey to find out what effects of treatment and care are important to children and adolescents with #kidneydisease. Take the survey today: bit.ly/2N2gLeq #CKD

Great work, but it's a shame that most patients and families can't access genetic testing. Cost is always cited but that's short-term thinking.

Ministro della Salute Giulia Grillo legga la testimonianza e la petizione di questi coraggiosi genitori e inserisca la diagnosi preimpianto (PMA/PGD) nei LEA - Diritto alla famiglia per i malati genetici! - Sign the Petition! chn.ge/2MQNL5c AIRP - Associazione Italiana Rene Policistico ets PKD International

Sai che AIRP - Associazione Italiana Rene Policistico ets avrà il suo Talk Show durante il Congresso Nazionale della #SIN Società Italiana di #Nefrologia ? Ti aspettiamo Il 4 ottobre 2018 alle 15:00 Palacongressi Rimini di Rimini. Vieni a trovarci! 🌷#ARPKD #ADPKD #BumpPKD #Renepolicistico

#octreotide è stato inserito da AIFA tra i farmaci erogabili a carico del SSN per il rallentamento progressione insufficienza renale associata a rene policistico #ADPKD in adulti con #CKD stadio 4 piu info nel link facebook.com/AirpAssociazio…

#octreotide per il rallentamento della progressione dell’insufficienza renale associata ad #ADPKD in adulti con #CKD di stadio 4 e rischio di rapida progressione verso l’uremia terminale e terapia dialitica sostitutiva. AIRP - Associazione Italiana Rene Policistico ets renepolicistico.it/2018/10/10/l-o…

We encourage (our) Patient Advocates to sign up for the Share4Rare Webinar “Following Scientific News for Patient Advocates”. You will learn 2 find & efftively read scientific publications & 2 make the most from visiting scientific congresses. bit.ly/2CG6Ia2 EASL Education

European Study coordinated by Prof. Emma & Dott.ssa Massella Bambino Gesù highlight High prevalence of #hypertension in #ADPKD children starting from very young age PKD International SwissPKD @PKD_eV renepolicistico.it/2019/02/26/pre…

#BloodPressure monitoring executed by Paediatricians in the occasion of their regular medical check ups is recommended in children with an early diagnosed #ADPKD

Sport is a crucial factor in your physical and mental wellbeing. I am very proud of my two champions running it off at the #Wädilauf #BumpPKD SwissPKD #ADPKD

Sei affetto da una patologia rara? Sei un paziente affetto da #ARPKD? Hai difficoltà ad accedere al tuo trattamento? Sei pregato di segnalarcele! Partecipa al sondaggio EURORDIS-Rare Diseases Europe AIRP - Associazione Italiana Rene Policistico ets #ARPKD PKD International surveymonkey.com/r/P2BBPFV

Fascinating! #ADPKD is a #RareDisease in US.

Two leading #ADPKD experts (Drs Torres and Harris) discuss the ever-controversial topic of prevalence. Is #ADPKD a #RareDisease or not? Maybe we need to change the definiton of rare...

Tomorrow at 6:30pm, we invite you to join us to discuss ways of looking after your emotional well-being during Covid-19 restrictions with Dr Suzanne Whitehead, Clinical Psychologist at Southmead Hospital, Bristol. To register 👉 bit.ly/2VKUDZH We hope you can join us.

🚀 Just 4 days to go until our virtual balloon race! Lifting off at 7pm, 1 May - take part & help us reach new heights in PKD research, have fun, & be in with the chance of winning £100 worth of shopping vouchers! Get your balloon here 👉bit.ly/3cLdrh9 £3 a balloon 🎈🌍

The Inter-Agency Standing Committee (IASC), in collaboration with children, has written a book to help explain the Coronavirus/COVID-19. For 6-11 year olds. In multiple languages, To be read out loud to children (not by children) 💗 Please share freely 👉 bit.ly/35e3UfQ

Excellent news!

Friday 13th 2004🩸Rog was 15. I remember our GP knocking on the front door saying call an ambulance. I didn’t #SpotLeukaemia, thought he was a lazy teen, didn’t know it was fatigue, no one suspected ALL🩸#WLD20 16yrs on & 💪🏼 ♥️#BloodCancerAwarenessMonth #RecognisingBloodCancer

With the Pfizer COVID-19 vaccine being distributed across the country, many in our community have questions about the vaccine and PKD. We sat down with Patrick Dean, M.D., a surgical director at Mayo Clinic Rochester, to answer your questions. pkdcure.org/pkd-and-the-co…