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Alport Syndrome is a kidney disease that is inherited and can often be found in families. Alport Syndrome affects a protein on the lining of the glomeruli which are the filters in the kidney. The tiny blood vessels in your kidneys become damaged and can lead to kidney disease and kidney failure. New data shows that the changes in the genes (aka mutations) that control this protein are more common than we once thought. The new name of the group of diseases caused by these mutations are collagen IV-related kidney diseases.

Some but not all of people with these changes in their genes (aka mutations) will have gradual loss of kidney function. Some people also have hearing loss and problems within their eyes. At Tufts Medical Center, the first step in caring for you is to carefully consider the type of collagen IV-related kidney disease that you may have. We do this based on your family history, current kidney function, amount of kidney damage and whether or not you have hearing or vision loss. First, we will take a careful and complete medical history and might ask our colleagues in Medical Genetics or in audiology or ophthalmology to help us. Then, your team of doctors will work together to give you the individualized care to manage your symptoms and take control of your health.

It is an exciting time in Alport Syndrome care. There are ongoing studies testing new treatments. Dr. Inker participates in these trials and is a member of the Medical Advisory Board for the Alport Syndrome Foundation (Alport Syndrome Foundation - Hope, Action, Support). As new treatments become available, each patient will have more options for what is best for their own health and life goal

At Tufts Medical Center, our goal is to give each patient a lifetime of individualized care. We help patients understand what is known and what is not known about their disease and treatments to help them make the best treatment decisions. We understand what it's like to live with kidney disease. Dr. Inker and her team are experienced and dedicated kidney doctors who can help you and your family life your life with kidney disease.

Our services include:

Advice and counseling on all aspects of inherited kidney disease
Comprehensive, multidisciplinary care for all stages of chronic kidney disease
Hearing testing and audiology counseling and hearing aid fitting
Vision testing
Genetic screening, counseling and family planning
Nutritional and other lifestyle counseling
Access to clinical trials to slow progression
Dialysis services, including access surgery
Kidney transplantation and donor-matching services

Programs + Services | Doctors + Care Team | Research + Clinical Trials | News

Programs + Services

Nephrology

The Division of Nephrology at Tufts Medical Center in Boston specializes in the study, diagnosis and treatment of kidney disease and high blood pressure and more.
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Center for Glomerular Disease

Our Glomerular Disease clinic is a multi-disciplinary clinic designed to provide comprehensive diagnosis and treatment of kidney glomerular disorders. We will use an evidence–based approach combined with individualized decision making to take care of you.
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Doctors + Care Team

Dallas Reed, MD

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Accepting New Patients

Virtual Appointments Available

Title(s): Chief of Genetics; Obstetrician/Gynecologist; Medical Geneticist; Assistant Professor, Tufts University School of Medicine
Department(s): Obstetrics and Gynecology, Women's Care; Pediatrics, Genetics + Metabolism
Appt. Phone: Obstetrics and Gynecology: 617-636-2229
Fax #: 617-636-0751

Obstetrics/gynecology, medical genetics

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Sajani N. Shah, MD

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Accepting New Patients

Virtual Appointments Available

Title(s): Surgeon; Assistant Professor, Tufts University School of Medicine
Department(s): Surgery, Bariatric and Minimally Invasive Surgery, General Surgery
Appt. Phone: 617-636-6093
Fax #: 617-636-9095

General surgery, laparoscopic surgery, obesity surgery, trauma surgery

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Michael E. Tarnoff, MD, FACS

Accepting New Patients

Title(s): CEO, Tufts Medical Center; Associate Professor, Tufts University School of Medicine
Department(s): Surgery, General Surgery
Appt. Phone: 617-636-6093
Fax #: 617-636-9095

General surgery, advanced laparoscopic surgery, obesity surgery

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David Drew, MD, MS

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Accepting New Patients

Title(s): Nephrologist; Assistant Professor of Medicine, Tufts University School of Medicine
Department(s): Medicine, Nephrology
Appt. Phone: 617-636-5866
Fax #: 617-636-2369

General nephrology, chronic kidney disease (CKD), diabetic kidney disease, glomerular disease, vasculitis, hypertension, cardiovascular disease in patients with kidney disease, acute kidney disease, acute kidney injury, kidney stones and monoclonal gammopathy of renal significance

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Craig E. Gordon, MD, MS

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Accepting New Patients

Virtual Appointments Available

Title(s): Nephrologist; Associate Professor of Medicine, Tufts University School of Medicine
Department(s): Medicine, Nephrology
Appt. Phone: 617-636-5866
Fax #:

Polycystic kidney disease (PKD), hepatitis C virus in chronic kidney disease, Thrombotic microangiopathy, glomerular disease, kidney transplantation, chronic kidney disease

View Full Profile for Craig E. Gordon, MD, MS

Lesley A. Inker, MD, MS

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Accepting New Patients

Virtual Appointments Available

Title(s): Director, Kidney and Blood Pressure Center; Director, Kidney Function and Evaluation Center; Director, Quality Improvement; Professor, Tufts University School of Medicine
Department(s): Medicine, Nephrology
Appt. Phone: 617-636-5866
Fax #: 617-636-2369

Geriatric nephrology, pregnancy, HIV-associated kidney disease, kidney transplantation, kidney donor evaluation, medical treatment for kidney failure without dialysis, kidney function evaluation (GFR), general nephrology, chronic kidney disease (CKD), diabetic kidney disease, glomerular disease, vasculitis, hypertension, cardiovascular disease in patients with kidney disease, acute kidney disease, acute kidney injury and kidney stones

View Full Profile for Lesley A. Inker, MD, MS

Kathryn Y. Noonan, MD

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Accepting New Patients

Title(s): Neurotologist; Associate Program Director, Otolaryngology Residency Program; Assistant Professor, Tufts University School of Medicine; Clerkship Director, Tufts University School of Medicine
Department(s): Otolaryngology, Neurotology
Appt. Phone: 617-636-8724
Fax #: 617-636-1479

Acoustic neuromas, glomus tumors, and other skull base diseases, cochlear implants and hearing loss disorders, otosclerosis, cholesteatoma, and chronic ear diseases

View Full Profile for Kathryn Y. Noonan, MD

Research + Clinical Trials

A Phase II, Multi-center, Open-Label Study to Assess Safety, Tolerability, Efficacy and Pharmacokinetics of R3R01 in Alport Syndrome Patients with Uncontrolled Proteinuria on ACE/ARB Inhibition and in Patients with Primary Steroid-Resistant Focal Segmental Glomerulosclerosis

The purpose of this Phase II trial is to see if R3R01 is safe in patients with Alport Syndrome and Focal Segmental Glomerulosclerosis. This will be done by evaluating how efficient R3R01 is in decreasing proteinuria levels. The study will consists of a screening period, a treatment period, and a follow-up period. If you qualify, you will receive the study drug R3R01 for 12 weeks. We will then follow up with you after for an additional 12 weeks.
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News

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Alport syndrome expert appointed to Medical Advisory Committee

Learn more about the Alport Syndrome Foundation and the committee

Alport's Syndrome

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Alport syndrome expert appointed to Medical Advisory Committee