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Scleroderma Experts Directory

Author: Shelley Ensz. Scleroderma is highly variable. See Types of Scleroderma. Read Disclaimer
Expert Lists:
United States
World
Europe
U.S. & World
Research Fund
ISN Medical Advisory Board
Finding Rheumatologist
Physician/Patient Relationships
About Doctors and Clinics

Overview: 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: U.S.

ISN LogoISN Guide to Scleroderma Experts and Centers 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.

ISN Guide to Scleroderma Experts: Worldwide

ISN LogoISN Guide to Worldwide 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. 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)

A comparison between general rheumatologists and scleroderma (SSc) experts with respect to following systemic sclerosis guidelines. Compared to SSc experts, general rheumatologists did not differ in their practices for many SSc guidelines despite the fact that they do not see many SSc patients when compared to SSc experts, but there was site variability. Clinical and Experimental Rheumatology Online, 07/02/2015.

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

Helping Patients Make the Right Decisions. Fewer than half of patients believe their clinicians understand their goals and concerns, and many people who are seriously ill say their medical care is not aligned with their preferences. New York Times, 09/15/2016.

Doctors blame many factors for futile care, themselves included. Doctors who were asked about causes of inappropriate care at the end of life didn’t have to look far to place blame. Reuters Health, 06/17/2016.

Doctors need to know if patients are skipping pills. Many doctors don't have a good way of knowing whether patients are skipping medication doses, new research suggests. Reuters Health, 05/11/2016.

“It's just lady pains”: Are doctors not taking women’s agony seriously enough? Some doctors have a problem with women’s pain; they don’t take it as seriously as they would a man’s but what they need to ensure is that they aren’t dismissing women’s problems. The Telegraph, 10/22/2015.

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.

About Doctor and Clinic

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. .

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.

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.

Go to Worldwide Scleroderma Experts
 
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