Hereditary Amyloidosis (hATTR)
Awareness and Early Detection
CHAPTER 5 – U.S. AMYLOIDOSIS CENTERS
University of Alabama at Birmingham (UAB) is committed to being a leader in patient experience, research, and education for patients with amyloidosis. Collaborative specialists from the O’Neal Comprehensive Cancer Center and the Cardiovascular Institute at UAB work together to provide the most efficient and advanced treatment options for patients with amyloidosis. A multidisciplinary team works in to provide high quality, patient-centered care through coordinated visits, testing, and treatment.
Contact Information
800-822-8816
1720 2nd Avenue South, NP 2540
Birmingham , Alabama 35294-3300
University of Arizona College of Medicine – Phoenix, in collaboration with Banner Health, offers specialized care for amyloidosis at the Banner – University Medicine Advanced Heart Failure Clinic. The multidisciplinary team provides advanced diagnostics and evidence-based treatments for amyloidosis-related cardiomyopathy and other forms.
Contact Information
Daisy Nava Serna
daisy.navaserna@bannerhealth.com
602-521-3090
755 E McDowell Rd, Floor 4
Phoenix, Arizona 85006
Mayo Clinic in Arizona builds on our tradition of safe, innovative, integrated care. On two main campuses in Scottsdale and Phoenix, you’ll receive world-class, safely delivered care in a serene environment enhanced by peaceful walking paths and meditation gardens.
Contact Information
480-301-8484
5777 E. Mayo Blvd
Phoenix, Arizona 85054
UC San Diego Health’s Cardiac Amyloidosis Program provides expert care through a multidisciplinary team specializing in the diagnosis and treatment of cardiac amyloidosis. The program offers advanced diagnostics, personalized treatment plans, genetic counseling, and access to cutting-edge clinical trials.
Contact Information
Michelle Rubin
mogata@health.ucsd.edu
858-657-8530
9434 Medical Center Dr MC 7411
La Jolla, California 92037
University of California, San Francisco (UCSF) Comprehensive Amyloidosis Center is comprised of leading experts in hematology, cardiology, nephrology, neurology, radiology, and pathology. Their multi-disciplinary approach ensures the catering of treatment to each individual patient. Learn more about the UCSF Comprehensive Amyloidosis Center.
Contact Information
415-353-2421
400 Parnassus Avenue
San Francisco, California 94143
The City of Hope Hematologic Malignancies and Stem Cell Transplantation Institute is one of the most successful hematology / oncology teams in the world, leading innovation and driving new discoveries in hematologic cancers and blood disorders. Established in 1998, their stem cell transplant center is consistently recognized for its high standard of care. The City of Hope 3D Oncologic Imaging Center also provides state of the art diagnostic imaging services for quick and accurate diagnosis.
Contact Information
Michael Rosenzweig, MD
mrosenzweig@coh.org
626-256-4673 x82405
1500 East Duarte Rd.
Duarte, California 91024
The Amyloidosis Program at Cedars-Sinai in Los Angeles, California, offers comprehensive care for patients with amyloidosis, a rare condition characterized by abnormal protein deposits in organs and tissues. The program provides advanced diagnostic services, including specialized imaging and tissue biopsies, to accurately identify and subtype amyloidosis. Treatment options are tailored to each patient’s needs and may include chemotherapy, targeted therapies, and participation in clinical trials exploring novel treatments. The multidisciplinary team comprises experts in hematology, cardiology, nephrology, and neurology, ensuring a holistic approach to patient care. Additionally, Cedars-Sinai offers a Virtual Second Opinion service, allowing patients to consult with specialists remotely for personalized treatment.
Contact Information
127 S. San Vicente Blvd. Pavillion 7th Floor
Los Angeles, California 90048
Stanford Healthcare Amyloid Center is one of the largest amyloidosis treatment centers in the country. Their multi-disciplinary team includes 11 specialists in cardiology, hematology, nephrology, otolaryngology, rheumatology, and other fields. They are experienced in designing individualized treatment regimens as well as performing organ transplants. They treat all types of amyloidosis and offer access to promising, new clinical trials as well as support staff and support groups. Learn more about the Stanford Amyloid Center.
Contact Information
Patricia Ulloa, RN
amyloid@stanford.edu
650-724-4942
300 Pasteur Drive
Stanford , California 94305
The Amyloidosis Program at University of Colorado Health (UCHealth) is a comprehensive, multidisciplinary program dedicated to diagnosing and treating all forms of amyloidosis. Patients can access care through cardiology, neurology, or hematology/oncology, ensuring a seamless approach tailored to their specific needs. The program is based at the University of Colorado Hospital on the Anschutz Medical Campus in Aurora, Colorado, a leading center for specialized care and innovative research.
Contact Information
Jacob Bockhorst
jacob.bockhorst@uchealth.org
720-848-2080
1635 Aurora Ct. Suite 4500
Aurora , Colorado 80045
Yale University offers a comprehensive Amyloidosis Program with a multidisciplinary approach involving specialists in cardiology, hematology, neurology, and oncology. The program provides:
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Advanced Diagnostics: Cutting-edge imaging and genetic testing for early and precise diagnosis.
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Personalized Care: Tailored treatment plans for all amyloidosis types, including cardiac involvement.
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Access to Clinical Trials: Opportunities for innovative therapies and participation in research.
Contact Information
Laura Nemac
laura.nemec@ynhh.org
(203)200-4363
333 Cedar Street
New Haven , Connecticut 06510
Sylvester Comprehensive Cancer Center (SCCC) is an academic hospital with a renowned multi-disciplinary hematology / oncology program. The division of hematology / oncology collaborates with other specialists to provide streamlined diagnosis and treatment of rare and complex hematologic and oncologic diseases like amyloidosis. SCCC has a well-trained and dedicated specialist, James E. Hoffman, MD, in multiple myeloma and amyloidosis to offer comprehensive care within the Cancer Center. The division is active in basic, translational, and clinical research endeavors and is committed to developing new clinical trials for patients. Learn more about Sylvester Cancer Center’s approach to amyloidosis.
Contact Information
James Hoffman M.D.
j.hoffman4@med.miami.edu
(917)518-5454
1475 NW 12th Avenue
Miami , Florida 33136
Mayo Clinic Jacksonville has an established amyloidosis practice that is growing every year. Their multi-disciplinary team approach ensures patients receive well-rounded and comprehensive care. Their facilities are well-equipped with state of the art diagnostic equipment, infusion centers, and highly experienced bone marrow transplant specialists.
Contact Information
Dr. Taimur Sher
sher.taimur@mayo.edu
904-953-7290
4500 San Pablo Road
Jacksonville, Florida 32224
Piedmont Heart Institute’s Amyloidosis Program offers expert care for patients with cardiac amyloidosis, a rare condition where abnormal proteins build up in the heart, causing heart failure and arrhythmias.
Types Treated:
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Transthyretin (TTR) Amyloidosis: Age-related or genetic protein misfolding.
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Light Chain (AL) Amyloidosis: Caused by abnormal bone marrow cells.
Diagnostic Services:
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Advanced imaging (Echocardiography, PYP Scans, Cardiac MRI)
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Endomyocardial biopsy
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Genetic testing
Multidisciplinary Care Team:
Specialists in cardiology, hematology-oncology, and cardiovascular imaging collaborate for comprehensive care.
Research & Clinical Trials:
Access to clinical trials ensures cutting-edge treatments and innovative care.
Contact Information
Brittany Cypher
brittany.cypher@piedmont.org
720-934-0407
1267 Highway 54 West Suite 2500
Fayetteville, Georgia 30269
University of Chicago Medicine Cardiac Amyloidosis Program includes a team of multidisciplinary experts who have the experience to diagnose and treat this complex condition. They are committed to offering their patients the best quality of life during and after treatment. University of Chicago is also involved in groundbreaking research into the disease and its causes, so they can identify high-risk patients and develop effective, long-term treatments. They also offer genetic testing for patients and their families.
Contact Information
773-702-9396
5841 S. Maryland Ave Chicago, IL
Chicago , Illinois 60637
Northwestern Medicine Amyloid Program offers consultation with experts in the field as well as leading-edge diagnostic testing and advanced treatment options, including the possibility of participation in clinical trials. Through the integration of medicine and research, our patient-focused, multidisciplinary team works together to design the best course of treatment for every patient. Northwestern Medicine experts provide consultations, diagnostic testing and advanced treatment options for amyloidosis.
Looking for a Cardiovascular Second Opinion? It is important to know your treatment options and to have confidence in your physician. A second opinion can help you make smart treatment decisions.
Contact Information
Susan Lehrer
susan.lehrer@nm.org
312-695-3004
251 East Huron Street
Chicago, Illinois 60611
Loyola Medicine and The Cardinal Bernardin Cancer Center offers a multidisciplinary approach to amyloidosis care, providing patients with access to a dedicated team of experts specializing in the diagnosis and treatment of this complex disease. The center is designed to ensure patient comfort and promote seamless collaboration among healthcare providers to deliver the highest level of care.
Loyola Medicine is nationally recognized for its experienced team of specialists who come from diverse medical disciplines. These experts provide comprehensive care for amyloidosis patients, leveraging advanced diagnostic techniques, innovative treatments, and compassionate support tailored to individual needs.
The amyloidosis program at Loyola Medicine focuses on providing personalized care plans for patients with all types of amyloidosis. The team works closely with patients to address the underlying causes, manage symptoms, and improve quality of life, enabling individuals to maintain an active lifestyle and return to their daily activities with confidence.
Contact Information
Anne M. Rocconi
arocconi@lumc.edu
708-327-3215
2160 S 1st Avenue
Maywood, Illinois 60153
The Melvin & Bren Simon Cancer Center at Indiana University Medical Center offers a range of treatment options for patients with blood cancers. They routinely work together with physicians from other departments to offer well-rounded, comprehensive care for amyloidosis patients.
Contact Information
Janna Hilligoss
jhilligo@iupui.edu
(317) 278-3426
635 Barnhill Dr
Indianapolis, Indiana 46202
Saint Luke’s Health System offers a comprehensive Amyloid Program dedicated to diagnosing and treating all forms of amyloidosis. Their multidisciplinary team includes specialists in cardiology, hematology, nephrology, and neurology, ensuring a holistic approach to patient care.
Diagnostic Services:
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Specialized blood and urine tests
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Advanced echocardiography with longitudinal strain analysis
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Cardiac magnetic resonance imaging (MRI)
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Technetium pyrophosphate nuclear scintigraphy
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Biopsy of bone marrow, heart, kidneys, or abdominal soft tissue
Treatment Options:
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AL Amyloidosis:
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Anti-plasma cell therapy (chemotherapy)
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Bone marrow transplantation
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Access to clinical trials
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ATTR Amyloidosis:
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Medications such as Patisiran (Onpattro), Inotersen (Tegsedi), and Tafamidis
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Participation in clinical trials
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Saint Luke’s is also actively involved in research and clinical trials, providing patients with access to emerging therapies.
Contact Information
Alyssa Hosmann
amyloid@saintlukeskc.org
4321 Washington St. #2100
Kansas City , Kansas 64111
The Johns Hopkins University is a private research university in Baltimore, Maryland founded in 1876. They have a multi-disciplinary team that specializes in the treatment of amyloidosis and a world renowned neurologist that leads their clinical and research efforts in ATTR amyloidosis. Johns Hopkins’ integrated amyloidosis treatment center includes well-established peripheral nerve and cardiovascular treatment centers. The Peripheral Nerve Center is experienced in both diagnosis and treatment of amyloidosis polyneuropathy. The Heart & Vascular Institute has a dedicated Center for Inherited Heart Diseases that has experience in treating cardiac amyloidosis. Johns Hopkins has world renowned organ transplant teams and is committed to advancing physician education and clinical research in rare diseases like amyloidosis.
Contact Information
Jennie Ichniowski
jichnio1@jhmi.edu
410-502-2909
855 N Wolfe St. Rangos 435
Baltimore, Maryland 21205
Lahey Hospital & Medical Center’s Amyloidosis Program offers a comprehensive, multidisciplinary approach to the evaluation, diagnosis, and treatment of amyloidosis. Recognizing that amyloidosis can affect multiple organ systems, the program brings together specialists from cardiology, hematology, nephrology, neurology, gastroenterology, orthopedics, pathology, radiology, and pharmacy to develop individualized care plans for each patient.
The program provides access to the latest treatments and clinical trials, ensuring that patients receive cutting-edge care tailored to their specific needs. Regular multidisciplinary meetings facilitate collaborative decision-making, enhancing the quality and effectiveness of patient care.
Contact Information
Christine Doren
christine.k.doren@lahey.org
(781) 744-8002
31 Mall Road
Burlington , Massachusetts 01805
The Amyloidosis Center at Boston University School of Medicine and Boston Medical Center is recognized internationally as a leader in basic and clinical research on amyloidosis and related diseases. The Center is unique in its approach, providing exceptional care for patients with all forms of systemic and localized amyloidosis through the support of laboratory and clinical research. Learn more about the BU Amyloidosis Center.
Contact Information
Ayesha Chowhan
amyloid@bmc.org
617-358-4750
72 East Concord Street K-5
Boston , Massachusetts 02118
Tufts Medical Center is an academic research hospital dedicated to researching all types of amyloidosis. The John C. Davis Myeloma and Amyloid Program was founded as a part of the Tufts Cancer Center to ensure that patients with plasma cell diseases such as myeloma and amyloidosis receive excellent up-to-date patient care and treatment, as well as education and personal and family support. Tufts has a multi-disciplinary amyloidosis program made up of hematologists, transplant physicians, nephrologists, orthopedists, heart specialists, experienced pathologists, radiologists, nurses, and nurse practitioners. Learn more about the John C. Davis Myeloma and Amyloid Program.
Contact Information
Lori Brown
lbrown@tuftsmedicalcenter.org
(617) 636-6454
800 Washington Street Box 826
Boston , Massachusetts 02111
The BWH / DCFI Amyloidosis Program is a renowned amyloidosis program in Boston, MA. Formerly known as the Brigham and Women’s Cardiac Amyloidosis Program, one of the oldest cardiac amyloidosis specialty centers in the country, the Amyloidosis Program is expanding to cover all types of amyloidosis. Their skilled group of physicians are experts in both the diagnosis and treatment of amyloidosis and are dedicated to advancing research and understanding this rare disease through physician education and clinical trials. The facilities are equipped to provide the highest level of treatment and have on-site diagnostic capability with cardiac imaging and genetic testing.
Contact Information
Latoya Howard
lhoward6@bwh.harvard.edu
617-525-7053
75 Francis St.
Boston, Massachusetts 02115
Karmanos Cancer Institute has 13 multidisciplinary teams to treat complex and rare diseases. Their Malignant Hematology Oncology Multidisciplinary Team includes hematologists, pathologists, cytogeneticists, medical oncologists, nurse practitioners, dieticians, and social workers to help patients with all aspects of their care. They specialize in treating leukemia, multiple myeloma, and amyloidosis among several other blood disorders.
Contact Information
Christy Houde
houdec@karmanos.org
313-576-8673
4100 John R
Detroit, Michigan 48201
Mayo Clinic has treated more than 7,600 amyloidosis patients. They have a special team of doctors who specialize in diagnosing and treating protein disorders of the blood, such as amyloidosis. The center is equipped with advanced diagnostic tests for amyloidosis not available at all medical centers. At Mayo Clinic, hematologists work closely with doctors who specialize in pathology, transplantation and cancer, as well as in diseases of the brain and nervous system, heart and kidneys. Mayo Clinic has one of the largest and most experienced transplant practices in the United States as well as clinical trials addressing new diagnostic and treatment methods for amyloidosis.
Contact Information
hemeappt@mayo.edu
(507) 284-5363
200 First Street SW
Rochester, Minnesota 55905
The Amyloid Center of Excellence at Washington University in St. Louis in collaboration with Barnes-Jewish Hospital offers specialized diagnosis and treatment for amyloidosis, bringing together experts in cardiology, hematology, neurology, and more to address this complex disease. With advanced diagnostic tools and access to clinical trials, the Center provides personalized care for both AL and ATTR amyloidosis, supporting patients every step of the way. Patients and referring physicians can reach the Center for guidance and appointments.
Contact Information
Connie Pocheck
dom-bmt_newpatient@email.wustl.edu
314-454-8339
4940 Parkview Place
Saint Louis, Missouri 63110
The Cardiac Amyloidosis and Cardiomyopathy Center at Robert Wood Johnson University Hospital and Rutgers Robert Wood Johnson Medical School is New Jersey’s first dedicated center for cardiac amyloidosis diagnosis and care. Led by Dr. Sabahat Bokhari, a pioneer in non-invasive cardiac imaging for ATTR-CM, the center offers expert multidisciplinary care across cardiology, hematology, neurology, and nephrology.
The program is recognized for its patient-centered approach, rapid diagnosis, and integration of the latest treatment strategies for both AL and ATTR amyloidosis. Over 600 patients have received care since the center’s founding in 2022. The team also leads clinical education efforts, supported by a Pfizer-funded fellowship focused on early amyloidosis detection.
Contact Information
Nidara Fields-Hill
nidara.fields-hill2@rwjbh.org
(732) 418-8055
200 Little Albany Street East Tower- 8th Floor
New Brunswick, New Jersey 08901
NYU Langone Health: NYU Amyloid Center provide the expert, multidisciplinary care needed to manage all aspects of amyloidosis.
Our team of experts specializes in the care of people who have amyloidosis, a complex disease that can affect the heart, kidneys, gastrointestinal tract, nervous system, and other organs. We bring together the expertise of clinicians from many disciplines to develop a comprehensive treatment plan that addresses your specific healthcare needs.
Contact Information
646-501-0119
550 First Avenue
New York , New York 10016
Columbia Amyloidosis Multidisciplinary Program (CAMP) specializes in the diagnosis and treatment of systemic amyloidosis. Every year CAMP treats over 100 amyloidosis patients. Columbia has been dedicated to advancing amyloidosis research since the 1970s. Their early research paved the way for CAMP to become a leader in amyloidosis treatment and research with highly specialized physicians working together to address this multi-organ disease. CAMP offers highly individualized treatments tailored to each patient’s unique disease manifestation and demographic profile.
Contact Information
Erika Alvarez
212-305-9268
161 Fort Washington Avenue
New York, New York 10032
Memorial Sloan Kettering Cancer Center has a dedicated team for the diagnosis and treatment of rare blood disorders. Every patient receives multi-disciplinary care from a team of doctors specific to their individual disease. This may include a hematologist, radiologist, pathologist, and others. MSKCC is dedicated to furthering research and is actively participating in numerous clinical trials for amyloidosis.
Contact Information
Heather Landau
landauh@mskcc.org
(212) 639-8808
1275 York Avenue
New York, New York 10065
The Multiple Myeloma and Amyloidosis Program at the University of North Carolina at Chapel Hill is a new and growing center specializing in care and treatment of all types of amyloidosis. Although a newer center, their director, Dr. Sascha Tuchman, has years of experience treating amyloidosis at Duke University Medical Center. Their comprehensive care and multidisciplinary team ensure all patients are treated holistically. Learn more about the UNC Amyloidosis Program.
Contact Information
Kelley Campbell
kelley.campbell@unchealth.unc.edu
984-215-5363
170 Manning Drive, CB 7305
Chapel Hill , North Carolina 27599
Duke Team of Amyloidosis Specialists
Because different organs may be affected, you will receive care from a team of specialists who treat amyloidosis, as well as the complications that can occur. The Duke team of amyloidosis specialists includes hematologist/oncologists, bone marrow transplant specialists, cardiologists, kidney specialists, gastroenterologists, and neurologists. We have extensive experience treating amyloidosis and its complications. We discuss your care, present opinions, and offer coordinated treatment recommendations and follow-up.
Access to Promising New Therapies
You may have access to our ongoing clinical trials, which study new therapeutic approaches that are not widely available or accessible at most other hospitals.
Contact Information
919-366-5708
10 Duke Medicine Cir Durham
Durham, North Carolina 27710
The Hematologic Oncology and Blood Disorders program at Levine Cancer Institute have a specialized team of hematologists dedicated to the treatment of plasma cell disorders such as systemic amyloidosis. They routinely work with consulting physicians, such as infectious disease specialists, dermatologists, pulmonologists, and surgeons, to provide each patient the best care. Clinical trials and support groups are also available.
Contact Information
980-442-5141
1021 Morehead Medical Drive Suite 500
Charlotte , North Carolina 28204
The Comprehensive Amyloidosis Clinic (CAC) at the Ohio State University has well-established clinical and research practices. Their multi-disciplinary team meets biweekly to discuss each patient holistically across multiple specialties. They offer a unique approach to patient care with highly personalized treatment plans as well as cutting edge research. At the CAC, patients will have access to genetic counseling, a specialized nursing staff, physical therapists, nutritionists and will receive the highest standard of care.
Contact Information
Dr. Yvonne Efebera
614-293-5066
460 W 10th Avenue
Columbus, Ohio 43210
The Cleveland Clinic Amyloidosis Center takes a multi-disciplinary approach to treating their patients. They have a dedicated team of stem cell transplant experts, social workers, clinical psychologists and hematology nurses to cover all aspects of patient care and experience. Cleveland Clinic has a unique interest and expertise in amyloidosis and has a team of experienced cardiologists, nephrologists, and neurologists. They are committed to advancing research in this rare disease through clinical trials.
Contact Information
216-444-6833
10201 Carnegie Ave
Cleveland, Ohio 44106
The Oregon Health and Science University (OHSU) Knight Cancer Institute has a multi-disciplinary team to design specific treatment plans for each individual patient. Their team includes medical and hematology oncologists, benign hematologists, cardiologists, neurologists, nephrologists, medical geneticists, and others as needed. They offer both national and international clinical trials and are equipped to treat all types of amyloidosis. Learn more about the OHSU amyloidosis approach.
Contact Information
Whitney Hayden
haydewh@ohsu.edu
503-494-8750
3181 SW Sam Jackson Park Road
Portland , Oregon 97239
The University of Pittsburgh Medical Center (UPMC) Cardiac Amyloidosis Center is a leading program dedicated to the diagnosis and treatment of amyloidosis The center’s multidisciplinary team—including cardiologists, cardiac imaging experts, and hematologists—provides comprehensive, patient-centered care using advanced diagnostic tools like nuclear heart scans, echocardiograms, and cardiac MRIs.
Treatment plans are tailored to the specific type of amyloidosis. For transthyretin (ATTR) amyloidosis, therapies aim to prevent protein deposits, while light chain (AL) amyloidosis treatment often includes chemotherapy or bone marrow transplantation. UPMC also offers access to cutting-edge clinical trials, innovative therapies, and resources to manage symptoms and improve quality of life, ensuring the best possible outcomes for patients.
Contact Information
Rebecca Conley
conleyr@upmc.edu
412-647-3435
200 Lothrop Street
Pittsburg, Pennsylvania 15213
The Allegheny Health Network Amyloidosis Program provides specialized care for patients with amyloidosis, a rare condition where abnormal proteins build up in organs, affecting their function. Our multidisciplinary team uses advanced diagnostics and personalized treatment plans to manage the disease and improve patient outcomes.
Why Choose Us:
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Expert Care Team: Specialists in cardiology, hematology, nephrology, neurology, and more collaborate to create personalized care plans.
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Advanced Diagnostics: State-of-the-art imaging, lab tests, and biopsies ensure accurate diagnosis and treatment.
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Comprehensive Treatments: Options include chemotherapy, targeted therapies, and stem cell transplantation for eligible patients.
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Genetic Counseling: Support for patients with hereditary forms of amyloidosis.
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Research & Clinical Trials: Access to cutting-edge treatments through clinical trials and research partnerships.
Conditions We Treat:
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Light Chain (AL) Amyloidosis: Targeted therapies and potential stem cell transplants.
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Transthyretin (ATTR) Amyloidosis: Medications to stabilize or reduce amyloid protein buildup.