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Dr. Chris Ryerson – Biography

5 August 2019

Dr. Chris Ryerson completed his core clinical training at the University of British Columbia and an interstitial lung disease (ILD) fellowship and Masters degree in clinical research at the University of California San Francisco before joining UBC faculty in 2011. He is an Associate Professor at UBC, director of the St. Paul’s Hospital ILD clinical and research program, and Head of the Division of Respiratory Medicine at Providence Health Care. His research focuses on management and prognostication of ILD. He is also involved in several national and international clinical practice guidelines on the diagnosis and management of fibrotic ILD.

Dr. Pearce Wilcox – Biography

5 August 2019

Dr. Wilcox is a respirologist at St. Paul’s Hospital and Professor of Medicine at The University of British Columbia (UBC). He graduated from Medical School at Queen’s University, Kingston, Ontario in 1980, did his Internal Medicine Residency at the University of Western Ontario from 1980-83 and his Fellowship in Respirology at UBC in 1983-86. He is also certified by the American Board of Internal Medicine.  Dr. Wilcox is the Medical Director of the Providence Health Care Pulmonary Function Laboratory at St. Paul’s Hospital and a Co-Director of the Scleroderma Respiratory Clinic.  He is the Medical Director for the UBC Adult Cystic Fibrosis Program based at St. Paul’s Hospital.   He is associated with The James Hogg Research Centre at St. Paul’s Hospital and the UBC Institute of Heart and Lung Health.  He is a member of the Canadian Thoracic Society Executive Committee, currently Past President.  His research interests include clinical research in cystic fibrosis as well as pulmonary manifestations of connective tissue disorders.

Dr Ada Man – Biography

9 July 2019

Dr. Ada Man completed her Internal Medicine residency at the University of Toronto.  She then undertook her Rheumatology residency at the University of British Columbia, and was the recipient of Gurmej Kaur Dhanda Scholarship awards for Systemic Sclerosis in 2011 & 2012.  She spent two years in Boston, USA at the Boston University Scleroderma Research Center for a research fellowship with an emphasis on epidemiology research as applied to Systemic Sclerosis.  Her research was focused on cardiovascular outcomes, interstitial lung disease progression, as well as patient reported outcome measures in Systemic Sclerosis.  She and her team developed the SSPRO – Scleroderma Skin Patient Reported Outcome – which has been validated in Systemic Sclerosis patients, and will be used in clinical trials.  She practices General Rheumatology with a special interest in Systemic Sclerosis at the Manitoba Clinic in Winnipeg, and is an Assistant Professor of Medicine and Community Health Sciences, Rady Faculty of Health Sciences, University of Manitoba.  She is a member of the Canadian working group for stem cell transplant in Systemic Sclerosis

The SPIN cohort

2 July 2019

The SPIN Cohort is a group of people with scleroderma from around the world who participate in SPIN’s online studies. Cohort participants are recruited by rheumatologists and other scleroderma healthcare providers from over 40 clinical sites in 7 countries. Through the cohort, SPIN collects information about important challenges to people with scleroderma and their support needs. Some cohort participants are also invited to test SPIN’s online support programs for scleroderma before releasing them to the public.

 

Click here to learn more about the cohort: www.spinsclero.com/cohort

 

Dr. Brett Thombs – Biography

29 June 2019

 

Dr. Brett Thombs, Director of SPIN

 

 

 

 

 

 

 

Dr. Thombs and his team focus on developing strategies to improve quality of life and reduce disability among people living with scleroderma. He is the Founder and Director of the Scleroderma Patient-centered Intervention Network (SPIN), a patient-researcher collaboration that maintains an ongoing cohort of > 2,000 patients from over 40 sites in 7 countries and conducts trials of patient-centered tools to support coping with scleroderma. Among his over 250 peer-reviewed publications, Dr. Thombs has authored > 80 on patient experiences and outcomes in scleroderma. He has been PI on over $3.5 million in funding for patient-oriented research in scleroderma.

 

The SPIN team consists of professionals with a wide variety of backgrounds, patient advocates, trainees, and support staff. For more information about these individuals, please click the following link: https://spinsclero.com/en/teams-committees

Scleroderma Quebec raises $ 240 000 for research and patient support

15 November 2016

PRESS RELEASE
For immediate release

Montreal, November 1st, 2016 – Scleroderma Quebec raised more than $ 240 000 during its benefit evening which was held at Montreal’s Cabaret du Casino on November 1st. The funds will be used to support patients who have scleroderma and to finance the research required to find a cure.  The event was organized under the Honorary Presidency of Mr. François Armand, RBC Royal Bank’s Regional Vice-President of Commercial Financial Services, Quebec Branch.  About 500 people attended the dinner-show starring Robert Charlebois who came back one more time this year by popular demand.
(more…)

Nutrition and Recipe Book

15 November 2016

Nutrition and recipe book for people with scleroderma

It can be a challenge to know what to eat for the betterment of one’s health.  This is particularly true for those affected by the numerous symptoms of scleroderma. (more…)

Scleroderma Support Group Survey

23 April 2015

Do you have scleroderma? Are you interested in helping advance research on scleroderma support groups? If so, please lend a hand by completing this short 10-15 minute survey!  (more…)

New drug approved for the treatment of pulmonary arterial hypertension

4 December 2014

Pulmonary arterial hypertension (PAH) is a common, serious complication of Scleroderma which can quickly lead to death if left untreated. Opsumit® (macitentan), a new treatment option, was shown to be effective in reducing morbidity and mortality in adult patients with PAH. (more…)

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