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Scleroderma Experts

Author: Shelley Ensz. Scleroderma is highly variable. See Types of Scleroderma. Read Disclaimer
Scleroderma Experts
ISN Guide to Scleroderma Experts (New!)
EUSTAR (Europe)
SCTC (U.S. & Worldwide)
ISN Scleroderma Research Fund
ISN Medical Advisory Board
Finding Rheumatologists
Physician/Patient Relationships
About Doctors and Clinics

Finding a Scleroderma Expert

Many scleroderma patients seek a consultation with doctors who specialize in scleroderma. This is a great way to get information on the latest therapies available.
Scleroderma experts are most often rheumatologists, although some of them are dermatologists. If you live far away, scleroderma experts will usually coordinate your care with your local medical team. (Also see: Overview of Antibodies, What is Scleroderma?, Types of Scleroderma and Systemic Symptoms)

ISN Guide to Scleroderma Experts and Centers

ISN LogoISN Guide to Scleroderma Experts and Centers reviewed, rated and listed by the nonprofit International Scleroderma Network, to help scleroderma patients and caregivers find the most suitable scleroderma expert or center for their location, age, type of illness, and insurance coverage. ISN.

EUSTAR Scleroderma Centers (European Countries)

EUSTAR Scleroderma Centers are primarily in European countries. They diagnose and treat scleroderma patients as well as conduct research studies.
Juvenile Scleroderma? If your child has scleroderma, make sure the center also treats children with scleroderma, since many of centers do not have scleroderma pediatric rheumatology specialists.

Scleroderma Clinical Trials Consortium (SCTC)

SCTC Scleroderma Centers are primarily in U.S., Canada, South America, Europe, Asia, and Australia. The ISN Scleroderma Expert List is current and has appointment numbers, but is still in development. In the meantime, please consult both lists. Posted 02/13/2014.

ISN Scleroderma Research Fund

The nonprofit International Scleroderma Network (ISN) supports top-notch scleroderma research through the ISN Scleroderma Research Fund. Your enthusiastic support of this fund will help provide better treatments for scleroderma! Support Stellar Scleroderma Research Now.

ISN Medical Advisory Board

The ISN Medical Advisory Board is comprised of world leaders in scleroderma research and patient care, or subspecialties, and they are thus a great resource for patients seeking diagnosis or treatment for scleroderma and related illnesses, as well. ISN.

Finding Rheumatologists (General)

How do your local health care providers rate? Research and rate your doctors using online tools such as HealthGrades. Reports include five star doctors and hospitals, as well as disciplinary reports. Health Grades. 10/12/2011.
American College of Rheumatology: Worldwide Electronic Directory of Members. Scleroderma patients are usually treated by rheumatologists. Due to the rarity of Scleroderma, most rheumatologists have little if any experience in treating Scleroderma. Therefore, many patients also have occasional consultations with a Scleroderma expert.

Physician and Patient Relationships

A voice is missing from discussions of the patient experiences. The demand for patient voices is on the rise as medical groups face requirements to document participation in governance and program decisions. Med Page Today, 06/20/2013.
The Paradox of the Doctor-Patient Relationship: A Medical Student's View. Doctors are privy to — but not really part of — patients' most private moments. Time Healthland, 06/23/2013.
Pain Perspective in Scleroderma. The role of the nurse practitioner/physician assistant is integral in assessing the various components of disability and pain experienced by the scleroderma patient. Susan L. Williams Judge, MN, ARNP. The Rheumatologist, July 2011. (Also see: Pain)
Fudan, UTHealth introduce international network to fight against scleroderma. The network was established by faculty at The University of Texas Health Science Center at Houston (UTHealth) and Fudan University in Shanghai, China, and it will help clinicians compare treatments and researchers share data. News Medical, March 24, 2011.
When Pharmacists Join The Health Care Team, Patients Win. Patients receiving pharmacist care followed their prescribed medication more closely and had better knowledge of their treatment. Overall quality of life scores were also improved. Medical News Today. 11/30/10.

About Doctor and Clinics

Scleroderma Clinic (University of California, San Francisco). The Scleroderma Clinic focuses on patients with systemic sclerosis (also known as scleroderma), mixed-connective tissue disease, Sjögren's syndrome and inflammatory myositis. 2011.
UPMC and University of Pittsburgh Scleroderma Center. The Center includes 5 full-time faculty members and 5 research staff. We have registries for systemic sclerosis in twins, childhood onset systemic sclerosis, localized scleroderma and Raynaud disease. Division of Rheumatology and Clinical Immunology. 10/26/10.
Australian Rheumatology Association (ARA). The ARA supports and educates members and other practitioners in the musculoskeletal field to enable provision of best possible management for patients. ARA.
 
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