Rare disorder potentially indicated for kidney transplant

Last reviewed

🖨 Print for my doctorAdvocacy Hub →
ORPHA:506213
Who is this for?
Show terms as
1FDA treatments8Treatment centers

Where are you in your journey?

UniteRare data is sourced from FDA.gov, ClinicalTrials.gov, Orphanet, OMIM, and NORD.
Report missing data

Overview

Orphanet code 506213 refers to a rare kidney disorder that may require a kidney transplant as part of its treatment. This category covers a group of serious inherited or acquired kidney diseases where the kidneys gradually lose their ability to filter waste and fluids from the blood. Over time, this can lead to chronic kidney disease (CKD) and eventually kidney failure, also called end-stage renal disease (ESRD). When the kidneys can no longer do their job, a transplant may become the best long-term option. These conditions can affect people of all ages, though many begin in childhood or early adulthood. Symptoms often develop slowly and may include swelling in the legs and ankles, high blood pressure, fatigue, and changes in how much urine the body produces. Because this Orphanet code is a broad grouping rather than a single named disease, the exact symptoms, causes, and genetic factors depend on the specific underlying condition a person has been diagnosed with. Treatment focuses on slowing kidney damage, managing symptoms, and preparing for kidney replacement therapy when needed. Kidney transplant offers the best quality of life for many patients with end-stage kidney failure. Dialysis is another option to replace kidney function temporarily. A team of specialists works together to find the best plan for each person.

Key symptoms:

Swelling in the legs, ankles, or feetHigh blood pressure that is hard to controlFeeling very tired or weakProducing less urine than normal, or changes in urine colorFoamy or bubbly urine (a sign of protein in the urine)Nausea or loss of appetiteDifficulty concentrating or feeling mentally foggyItchy skinMuscle cramps, especially at nightShortness of breath due to fluid buildup

Inheritance

Variable

Can be inherited in different ways depending on the underlying gene

Age of Onset

Variable

Can begin at different ages, from infancy through adulthood

Orphanet ↗NORD ↗

FDA & Trial Timeline

1 event
Dec 2018

Envarsus XR: FDA approved

ENVARSUS XR is indicated for the prophylaxis of organ rejection in kidney transplant patients in combination with other immunosuppressants.

FDAcompleted

Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.

Treatments

1 available

Envarsus XR

tacrolimus· Veloxis Pharmaceuticals, Inc.■ Boxed WarningOrphan Drug

ENVARSUS XR is indicated for the prophylaxis of organ rejection in kidney transplant patients in combination with other immunosuppressants.

No actively recruiting trials found for Rare disorder potentially indicated for kidney transplant at this time.

New trials open frequently. Follow this disease to get notified.

Search ClinicalTrials.gov ↗Join the Rare disorder potentially indicated for kidney transplant community →

No specialists are currently listed for Rare disorder potentially indicated for kidney transplant.

View NORD Rare Disease Centers ↗Undiagnosed Disease Network ↗

Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

Travel Grants

No travel grants are currently matched to Rare disorder potentially indicated for kidney transplant.

Search all travel grants →NORD Financial Assistance ↗

Community

Open Rare disorder potentially indicated for kidney transplantForum →

No community posts yet. Be the first to share your experience with Rare disorder potentially indicated for kidney transplant.

Start the conversation →

Latest news about Rare disorder potentially indicated for kidney transplant

No recent news articles for Rare disorder potentially indicated for kidney transplant.

Follow this condition to be notified when news becomes available.

Caregiver Resources

NORD Caregiver Resources

Support, advocacy, and financial assistance for caregivers of rare disease patients.

Mental Health Support

Rare disease caregiving can be isolating. Connect with counseling and peer support.

Family & Caregiver Grants

Financial assistance programs specifically for caregivers of rare disease patients.

Social Security Disability

Learn how rare disease patients may qualify for SSDI/SSI benefits.

Questions for your doctor

Bring these to your next appointment

  • Q1.What is the specific name of my kidney disease, and what is causing it?,Should I have genetic testing, and could this condition affect other family members?,How quickly might my kidney function decline, and what signs should I watch for?,When should we start talking about transplant, and how do I get on the waiting list?,If I receive a transplant, is there a risk that my disease could come back in the new kidney?,Are there any clinical trials or new treatments I should know about?,What dietary changes should I make right now to protect my kidneys?

Common questions about Rare disorder potentially indicated for kidney transplant

What is Rare disorder potentially indicated for kidney transplant?

Orphanet code 506213 refers to a rare kidney disorder that may require a kidney transplant as part of its treatment. This category covers a group of serious inherited or acquired kidney diseases where the kidneys gradually lose their ability to filter waste and fluids from the blood. Over time, this can lead to chronic kidney disease (CKD) and eventually kidney failure, also called end-stage renal disease (ESRD). When the kidneys can no longer do their job, a transplant may become the best long-term option. These conditions can affect people of all ages, though many begin in childhood or earl