Top Tweets for #PKDCommunity
Thank you, Boston! 💚💙💜
What a wonderful day at the 2026 Boston Walk for PKD.
Thank you to everyone who walked, volunteered, donated, supported, and showed up for the #PKDCommunity today.
Every step matters. Together, we’re moving toward brighter tomorrows.
#WalkForPKD #EndPKD #PKD
IT’S TOMORROW! 💙💚
The weather is looking great for the 2026 Boston Walk for PKD — sunshine, cooler temps & a perfect day to walk together! ☀️👟
📍 Artesani Park, Brighton
🕤 9:30 AM
👟 1.8 miles
https://t.co/AWERCfcfbx
#EndPKD #PKDFoundation #WalkForPKD #PKD #PKDCommunity
📣 New England #PKDCommunity — Big Science, Big Hope! 💙
Mark your calendars — April 2, 2026, 7-8pm (ET)! Join the #PKDFoundation – New England Community for an exciting virtual webinar featuring🩺 Dr. Peter Czarnecki from #BethIsraelDeaconessMedicalCenter, a PKD Center of Excellence.
🔬 Genetic testing is transforming the PKD landscape — and this webinar will break down what that means for YOU.
✨ Here’s what we’ll explore:
• How genetic testing is changing PKD diagnosis, prognostication, and treatment
• Why the exact genetic mutation matters more than ever for future therapies
• A clinical trial already underway studying a novel mutation-specific treatment
• Live Q&A and discussion at the end — bring your questions!
This is cutting-edge science happening right now — and it’s shaping the future of PKD care in real time.
Whether you’re living with PKD, caring for someone who is, or just want to stay ahead of the latest developments, you won’t want to miss this conversation.
🔗 Save your spot today:
https://t.co/5GFbILoLXy
Knowledge is power. Community is strength. And together, we’re moving closer to better treatments. 💜
#PKD #NewEnglandPKD #GeneticTesting #EndPKD
💚 March is National Kidney Month! 💚 #NationalKidneyMonth
Yesterday we kicked off a powerful month of awareness, advocacy, and action for the #PKDCommunity.
We are living in what many are calling a “golden age” of #PKDResearch— a time of unprecedented scientific momentum and real therapeutic progress. Breakthroughs are happening. Hope is growing. But sustained community support is what turns scientific progress into life-changing treatments.
This is where youcome in. ✨
Here’s how you can help us reach our $90,000 Kidney Month goal:
🔹 Engage on social media:
Like, share, and comment on PKD Foundation posts throughout the month. Every interaction expands our reach and strengthens awareness.
Find us here: https://t.co/5TUI7NawPu
🔹 Reach out to your network:
Send a quick text, email, or repost. Let your friends and family know that their support fuels research and moves us closer to real treatment options — and ultimately, a cure.
🔹 Spread the word about the match!
All donations will be matched dollar for dollar up to $15,000, thanks to a generous donor. That means every gift has double the impact!
This month is about more than awareness. It’s about showing what’s possible when a community rallies behind science, hope, and progress. We are working to give future generations something many before them did not have: real options, real treatments, and one day, a cure. 💚
Thank you for standing with the PKD community and helping make National Kidney Month a success!
#PKDFoundation #PKD #DoubleYourImpact #KidneyHealth #CurePKD
Hear firsthand accounts from a PKD patient and caregiver on the challenges and advancements in managing pyruvate kinase deficiency. 🙌💬 New episode out now: https://t.co/hfGRfFkOxu
#PKDCommunity #PatientAdvocacy #pkdguidelines
@AgiosPharma
👥 Meet our Vice President: Corinne Lagrafeuil
We’re proud to introduce Corinne Lagrafeuil, Vice President of the #PKDInternational Board.
Corinne brings deep dedication, lived experience, and a strong commitment to the PKD community.
#ADPKD #ARPKD #PKDCommunity
As we mark this season of hope and renewal, PKD International extends our warmest wishes for Easter to all individuals, families, and partners in the PKD community around the world.
#PKDInternational #TogetherForPKD #PKDCommunity #StrongerTogether #ADPKD #ARPKD
Did you know that managing blood pressure can help slow the progression of #PKD? Stay informed and join us on Sep 21 in the fight against PKD. Register at https://t.co/cH6us4mePI #BostonWalkForPKD #kidneydisease #endPKD #CKD #Bostonfamily #PKDconnect #PKDcommunity #HealthAwareness #CommunitySupport #PKDAwareness
Symptoms of #PKD include high blood pressure, back pain, and frequent urinary tract infections. Early diagnosis is key! #EndPKD #kidneydisease #CKD #pkdcommunity #PKDCON #PKDCONnect #bostonwalkforPKD #KidneyCare #kidneyfoundation
Near and dear, far and wide, WE are celebrating International PKD Day ❤️
#pkd #pkdcommunity #internationalpkdday #supportgroup #cometogether #advocate #pyruvatekinasedeficiency
#TIF is happy to share with you the 1st issue of its quarterly #PKdeficiency #Bulletin, featuring a scientific advances digest & news on upcoming events/activities by the worldwide #PKDcommunity.
📥 https://t.co/ewqgzUx4tt @PKdeficiency @2021PKDF @TwPKDnonprofit @PKDFoundation
Thrive is announcing a #PKDconference Nov 5-7, 22 for pple & fams w/#PKdeficiency to celebrate our 60y hx. Conf & lodging free w/travel assistance available. Sponsors contact [email protected]
#pyruvatekinasedeficiency #rareanemias #pkdcommunity #thrivewithpkd #nonprofit
Happy 1st year anniversary @2021PKDF🙌
Congratulations on your ongoing efforts in educating & actively supporting the #PKDeficiency #patient community. Here's to many more in the future!🥂
#PyruvateKinaseDeficiency #PKDCommunity #RareDiseases #Haematology #TIF #Partners
On April 27th the #PKDCommunity will bring our voices to Capitol Hill for Virtual Advocacy Day 2022. Meetings with your congressional office will be set up on your behalf, and you can join from your own home!
📣 Adcovate to #endPKD! https://t.co/HiKK1BIRZo
The 1st full episode will be available in December!
👇Listen to the #podcast teaser - now available- and follow for future episode alerts!🔔
#PyruvateKinaseDeficiency #PKD #rarediseases #rareanemias #TIFPKdeficiency #haematology #TIFEducation #PKDConnect #PKDCommunity
Introducing Just Listen: Voices of PK Deficiency Podcast! Join us as we share patient and caregiver stories as well as the latest research, developments, and science from leaders in PK deficiency. Tune in: https://t.co/kJZEXO18H7 #PKdeficiency #KnowPKdeficiency
"By attending educational meetings and events that the St. Louis Chapter and the PKD Foundation provided, I was prepared for the day I would need a liver transplant."
- Jean Sommer, St. Louis Chapter and Walk Coordinator
#endPKD #PKDCommunity
https://t.co/0qFj7vE1EH
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