?? 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
Rare Kidney Disease Foundation
非盈利组织
Salt Lake City，UT 282 位关注者
RKFD is a patient-led collaborative focusing on awareness, community, and advocating for ADTKD patients and families.
关于我们
The Rare Kidney Disease Foundation is a patient-led collaborative established in 2018 by a family impacted by ADTKD, a rare genetic cause of kidney impairment. We focus on raising awareness, building community, and advocating effectively for ADTKD patients and families.
- 网站
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https://www.rarekidney.org/
Rare Kidney Disease Foundation的外部链接
- 所属行业
- 非盈利组织
- 规模
- 11-50 人
- 总部
- Salt Lake City，UT
- 类型
- 非营利机构
- 创立
- 2018
地点
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主要
获取路线
US，UT，Salt Lake City，84117
Rare Kidney Disease Foundation员工
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Sharon M. McGroder, PhD
Executive Director
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Richard Nelson
Co-Founder & Patient Advocate, Rare Kidney Disease Foundation I CEO, Utah Technology Council (UTC) & TECNA I Believer l Liaison to UN, Church of…
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Suzanne Kelly
Volunteer at Rare Kidney Disease Foundation
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Sharon McGroder
Executive Director at Rare Kidney Disease Foundation
动态
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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
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?? 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"
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On Rare Disease Day and always, thank you Dr. Anna Greka and team at the Broad Institute of MIT and Harvard for your tireless work to find a treatment to HALT Autosomal Dominant Tubulointerstitial Kidney Disease (ADTKD)! #RareDiseaseDay #ADTKD #RareDiseaseMonth #RKDF #kidney
Broad Institute of MIT and Harvard, Mass General Brigham, Harvard Medical School
To mark Rare Disease Day 2025, we highlight how our team combines #nodal biology with scalable advances in genomics, imaging and machine learning/ #AI to revolutionize the speed and efficiency of developing much needed treatments for millions of patients. Rare diseases are collectively common: they affect 1 in 10 people, often leading to chronic disability and early death, especially in children. The world’s rarest diseases – and how they impact everyone. Thank you TED Conferences for the opportunity to share this idea! I am grateful to my brilliant colleagues and collaborators, not only locally but across the United States, such as in Birmingham, AL, Philadelphia, PA, and across the world. Most of all, I am thankful to all the patients and advocates who generously partner with us and work tirelessly to raise awareness! University of Alabama at Birmingham Every Cure The Termeer Foundation Mass General Brigham Harvard Medical School Broad Institute of MIT and Harvard Boston Children's Hospital Chan Zuckerberg Initiative Rare Kidney Disease Foundation CACNA1A Foundation SebastianStrong Foundation Mila's Miracle Foundation To Cure A Rose Foundation Cure Alzheimer's Fund RARE-X Global Genes #Ladders2CuresAccelerator https://lnkd.in/ewpan35f
Anna Greka: The world's rarest diseases — and how they impact everyone
https://www.ted.com
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Rare diseases affect 1 in 10 Americans. That’s one family on every block, one kid in every classroom, one desk in every office. The impact of that isn’t rare, it impacts every 1. The Rare Kidney Disease Foundation is a patient-led, patient-focused, nonprofit organization dedicated to halting the devastating impacts of ADTKD across generations by supporting physician-scientists in their quest to find a treatment and, eventually, a cure. #Every1Matters #RareDiseaseAwarenessMonth #ADTKD #RKDF
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?? Webinar Alert! ?? In partnership with AAKP, join Sharon McGroder, RKDF Executive Director and volunteer, for an insightful AAKP Healthline webinar discussing the second most common rare genetic kidney disease—Autosomal Dominant Tubulointerstitial Kidney Disease (ADTKD)—and hope on the horizon for a treatment! ?? Don't miss this important conversation. ?? Date: Thursday, February 27 ?? Time: 3 PM EST ??Register today ?? #ADTKD #RareDiseaseDay #AAKP #RareKidneyDisease #RKDF
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You aren’t “rare.” In fact, 1 in 10 Americans has a “rare” disorder. And for families facing rare genetic diseases, we believe that together there is hope. By collecting our knowledge and resources, we can help identify new biomarkers, new diagnostic and treatment pathways, and new hopes for a cure. Every 1Matters ?? Join us for the fight www.rarekidney.org #RareDiseaseAwarenessMonth #ADTKD #Every1Matters
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Thank you Silvana Bazua-Valenti and the amazing team at the Broad Institute for their tireless dedication in working towards a treatment and bringing HOPE to patients and families affected by ADTKD. Your efforts make a world of difference! #RareKidneyDisease #ADTKD #Kidney #hope #CKD
Flushing out misfolded uromodulin as a treatment concept for kidney proteinopathies: https://lnkd.in/dMxkhsKN Silvana Bazua-Valenti & team restored uromodulin localization in models of autosomal dominant tubulointerstitial kidney disease using a TMED-targeting small molecule.
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