Rare Kidney Disease Foundation

?? Don’t Miss the Most Important Event of the Year! ?? Join the Rare Kidney Disease Foundation for their 4th International ADTKD Virtual Summit: 'The Time is Now: Uniting to HALT ADTKD!' Date: Saturday, April 4th, 2025 (Science Program) Time: 10:00am - 1:00pm EDT & Canada Date: Sunday, April 5th, 2025 (Patient Program) Time: 10:00am - 1:00pm EDT & Canada ?? How to Join: Simply register now and receive a confirmation email with your link to join the webinar. It's quick, easy, and FREE! (By registering, you can attend one or both days). ?? Register Now! https://lnkd.in/g7SyEb2a

?? Exciting News Alert! ?? ?? The March edition of The Filter is here! Our quarterly newsletter is packed with the latest updates, upcoming events, and inspiring stories from our vibrant community. This quarter has been full of exciting developments, so don’t wait—dive in and explore what’s new! ?? https://loom.ly/nMBLLfw

"An Invisible Disease" – Autumn’s story is one of strength, resilience, and hope. ADTKD has affected generations of her family, but Autumn is determined to change the course. Her journey shows that even in the face of life's greatest challenges, hope can drive change https://lnkd.in/gqiheeVw

??Funding for research institutions and clinical trials is being cut as “fraud” and “waste.” Make 5 Calls today to stand up for NIH/NSF funding for research institutes and rare disorders, and hope over profit. ?? https://lnkd.in/ezTQ76sS ??Please don't forget to like, follow and share!??

??The Rare Kidney Disease Foundation is deeply concerned about proposed cuts to NIH funding that could jeopardize vital scientific research and potential clinical trials.?????? Please take a moment to read RKDF's full position statement. Please help us by liking and sharing our posts to raise awareness!

???? Don’t Miss This! ???? Watch Dr. Anna Greka as she joins Eric Topol on his podcast, Ground Truths. Dr. Greka shares about her exciting work in "Molecular Sleuthing for Rare Diseases" including ADTKD! This is a conversation you won’t want to miss! https://lnkd.in/g_zyJz54

?? Your Input is Needed! ?? If you're on a kidney transplant waitlist, do you have 10 minutes to take an important survey? Our partners at the American Association of Kidney Patients (AAKP) are conducting a survey to gather feedback from individuals on the kidney transplant waitlist about their thoughts on xenotransplantation—the use of kidneys from genetically engineered pigs as an emerging alternative to dialysis. By taking part, you'll: ? Help create an understanding of what kind of information would be most helpful for patients exploring new treatment options. ? Share your voice on how individuals with kidney failure feel about groundbreaking alternatives to dialysis and artificial kidneys. Please click on the link below to take this short survey ?? ?? https://lnkd.in/gpGbmpa5

Ever wondered what it takes to crack the code on genetic kidney disease? Tune in to hear the latest episode of "The Genetics Podcast: Hunting Rare Kidney Disease Mutations" hosted by Patrick Short. Join Dr. Anthony Bleyer from Wake Forest University School of Medicine and Dr. Stan Kmoch from Charles University, Prague, as they discuss their collaborative efforts to uncover genetic mutations and offer hope to families impacted by rare kidney disease. ??? Listen Now! https://lnkd.in/gbgpwA24

?? Now Available On Demand! ?? AAKP, in partnership with the Rare Kidney Disease Foundation, present AAKP HealthLine Webinar: "Hope for Patients with Rare Genetic Kidney Disease." Hosted by AAKP's Jerome Bailey, join Paul Conway, AAKP Vice President; Sharon McGroder, Executive Director of RKDF; and patient Autumn Carroll Steen as they dive into ADTKD, genetic testing, HOPE for a promising treatment, and share a powerful ADTKD family story #ADTKD #RareKidneyDisease #Kidney #RKDF . Don't miss out – watch it now! ?? https://lnkd.in/gFy8q6Tt. ?? Please don't forget to "like" and "share"

?? Rare Disease Day ?? Studying rare diseases, for example, rare inherited kidney diseases like ADTKD, can provide further insight into the functioning of other organs, leading to potential treatments for other not-so-rare diseases like ALS and Alzheimer's disease.