Medullary Cystic Kidney Disease is a rare kidney disorder.
|Nephrologist (Kidney Doctor)||See a kidney doctor to help you to manage signs and symptoms of kidney disease and also help to get you ready for a kidney transplant if needed.|
|Diet||When kidney disease is mild, eat the same heart-healthy diet that is recommended for the general population.|
|Stay in shape and keep weigh under control.||Being very overweight can make future transplant surgery difficult.|
|Check your blood pressure regularly.||As kidney disease worsens, blood pressure can increase, leading to increased risk of heart disease, stroke and heart attack. If your blood pressure is high, you should get it treated.|
|Do not smoke.||Smoking makes all kidney disease worse. It also causes hardening of the arteries and lung disease.|
I’m Andrew Hosking, the Founder and President of the UKD Foundation (ukdcure.org). We have established a foundation to “Promote research and education programs to discover effective treatments and a cure for Uromodulin Kidney Disease (UKD) and support affected families worldwide.” Before the cause of UKD was well understood, medical practitioners named the disease based on it's symptoms. Unfortunately, the symptoms vary across patients, and this has resulted in many names being used to describe this disease. We use Uromodulin Kidney Disease (UKD) to unify all names, which include: - Familial gout-kidney disease - Familial gouty nephropathy - Familial Juvenile Hyperuricemic Nephropathy Type 1 (FJHN1 & FJHN) - Familial Uromodulin Associated Nephropathy (FUAN) - Hyperuricemic Nephropathy - Medullary Cystic Kidney Disease Type 2 (MCKD2) - UMOD-Associated Kidney Disease (UAKD & UMAK) - UMOD-related kidney disease - Uromodulin Associated Kidney Disease (UAKD & UMAK) - Uromodulin storage disease Please check us out at http://ukdcure.org Andrew
Hello Medullary Cystic Kidney Disease Community, I am the member of a research team headed by Dr. Anthony Bleyer that studies Medullary Cystic Kidney Disease (MCKD). We are located in Winston-Salem, NC as part of Wake Forest School of Medicine. If you would like to contact us with any questions about MCKD, please reply below or email us at firstname.lastname@example.org We will answer promptly. Thank you, Kendrah Kidd Wake Forest Inherited Kidney Disease Research Team
Information about MCKD2 and research.
Informational website about MCKD1 created by the Wake Forest Inherited Kidney Disease team: symptoms, treatment, family matters, genetics, and research
The UKD Foundation, Inc. is a non-profit corporation, dedicated to our mission of:
Promote research and education programs to discover effective treatments and a cure for Uromodulin Kidney Disease (UKD) and support affected families worldwide.
Before the cause of UKD was well understood, medical practitioners named the disease based on the symptoms of the disease. Unfortunately, the symptoms vary across patients, and this has resulted in many names being used to describe this disease. We use Uromodulin Kidney Disease (UKD) to unify all these names, which include:
Familial gout-kidney disease
Familial gouty nephropathy
Familial Juvenile Hyperuricemic Nephropathy Type 1 (FJHN1 & FJHN)
Familial Uromodulin Associated Nephropathy (FUAN)
Medullary Cystic Kidney Disease Type 2 (MCKD2)
UMOD-Associated Kidney Disease (UAKD & UMAK)
UMOD-related kidney disease
Uromodulin Associated Kidney Disease (UAKD & UMAK)
Uromodulin storage disease
CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
Enrolling is easy.
After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.
Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
Visit sanfordresearch.org/CoRDS to enroll.
Start your own! With a worldwide network of 8,000 users, you won't be the only member of your community for long.
Visit our Frequently Asked Questions page to find the answers to some of the most commonly asked questions.
Join Rareshare to meet other people that have been touched by rare diseases. Learn, engage, and grow with our communities.FIND YOUR COMMUNITY
Our rare disease resources include e-books and podcasts
Community leaders are active users that have been touched by the rare disease that they are a part of. Not only are they there to help facilitate conversations and provide new information that is relevant for the group, but they are there for you and to let you know you have a support system on Rareshare.