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Scleroderma Canada serves as an advocate nationally for those affected by the disease and works collaboratively with regional scleroderma organizations and the international scleroderma community to achieve common objectives.
Scleroderma Canada's cover photo
Scleroderma Canada has updated the COVID-19 statement on our website. The information and recommendations may change as more is learned about COVID-19. We urge patients to please read the statement at www.scleroderma.ca and to check back for regular updates.
SPIN travaille à la mise en place d'un outil pour mesurer et évaluer les craintes que peuvent éprouver les personnes atteintes de sclérodermie face à la crise actuelle de COVID-19. Nous vous invitons à dresser une liste des craintes que vous éprouvez. survey.co1.qualtrics.com/jfe/form/SV_exkzO3QGjdgN1pX
The SPIN Group is developing a tool to measure fears and concerns that scleroderma patients may be feeling during the Covid-19 crisis. Please take their survey to share your concerns: survey.co1.qualtrics.com/jfe/form/SV_exkzO3QGjdgN1pX
Join some of Canada's leading lung health experts during an interactive webinar that will focus on questions around Covid-19 and its impact on those with lung disease. This webinar is open to all Canadians with lung disease and/or caregivers of Canadians with lung disease.
Friday, March 27, 4:00 PM Eastern Daylight Time (US and Canada)
Register in advance at: https://zoom.us/webinar/register/WN_kyzZ-4xKR_2LzQ9dU5d7Rg
Please note that space is limited to the first 1000 participants. If you choose to dial in, long distance charges may apply. Online participation is free. After registering, you will receive a confirmation email containing information about joining the webinar.
UPDATE: 🚨 Capacity For This Webinar Has Been Reached 🚨
We will provide a link for those who wish to watch afterward.
Learn how to Stay Well During Covid-19 by attending a webinar this Friday, March 27 at 12:00pm PST presented by The Scleroderma Research Foundation, The Scleroderma Foundation, and Scleroderma Canada and featuring Dr. Tracy Frech, MD, MS. University of Utah, Director of the Systemic Sclerosis Clinic. Register here https://bit.ly/ScleroWebinar32720
Canada's pharmaceutical supply isn't invincible. As Covid-19 trials move forward with chloroquine and hydroxychloroquine we risk an interruption to our supply of autoimmune disease medications, which has already begun to happen elsewhere. It is vital that Healthy Canadians take steps to protect Canada's supply of pharmaceuticals to ensure existing patients can continue to access the medications they rely on to treat their autoimmune diseases.
As the world's health experts race to find treatments -- and eventually, a cure -- for the novel coronavirus, two drugs have jumped to the front of the conversation: chloroquine and hydroxychloroquine.
If you couldn't participate in the Covid-19 + scleroderma VideoForum presented alongside Scleroderma Research Foundation, Scleroderma Foundation, SPIN - The Scleroderma Patient-centered Intervention Network and Scleroderma Society of Ontario, we have you covered. Watch the recorded session at https://www.youtube.com/watch?v=MT9RJ3-BqTs
Still have a question or concern? You can email your questions to [email protected]
Scleroderma Canada endorses the Scleroderma Foundation
on COVID-19 for people with scleroderma. To read their statement, please visit https://www.scleroderma.org/site/SPageServer?pagename=patients_COVID19_MSAB&AddInterest=1281#.XnOu1nJ7kdW
We are answering your Covid-19 questions Saturday, March 21st via a VideoForum. Scleroderma experts Maureen Sauvé, Dr. Janet Pope, Dr. John Varga, Dr. Donald Sheppard, & Dr. Brett Thombs of SPIN - The Scleroderma Patient-centered Intervention Network host the VideoForum to discuss recommendations and preventative measures for scleroderma patients.
During the live chat, type your question into the chat pane or submit questions ahead of time by visiting https://survey.co1.qualtrics.com/jfe/form/SV_ekUhpM68wg2AmTX
Join Live: www.gotomeet.me/SPIN-SSLED (access code 575-114-197) or phone-in (Canada) 1-888-455-1389
12:30pm NDT (St.-John's)
12:00pm ADT (Halifax)
11:00am EDT (Ottawa)
10:00am CDT (Winnipeg)
9:00am CST (Regina)
9:00am MDT (Edmonton)
8:00am PDT (Vancouver)
Note: Limit of 251 participants permitted - a link will be provided for all who wish to watch afterward.
Scleroderma Canada cares deeply about patients, caregivers and our scleroderma community. We understand the concerns surrounding COVID-19 across the country, and the health and well-being of our all of our members remains our highest priority. Considering the current global situation, all upcoming scheduled events are temporarily on hold. Please stay tuned to our social media channels for updates regarding these events.
Register before 11 am March 16th (EST) for a chance to WIN your 2020 National Scleroderma Conference registration. Winner will be drawn 12 noon EST Monday, March 16th. Register at www.sclerodermaconference.ca
We have been monitoring COVID-19 and are advising scleroderma patients to take the following precautions to stay healthy:
🧼 Wash you hands regularly
🤦♀️ Do not touch your face
🏠 Stay home if you're sick
👫 Avoid crowds and shaking hands
🤧 Cover your sneezes
Scleroderma patients should continue to take their medications unless they are showing signs of a high fever or serious infection. If that occurs, please seek medical attention and notify the doctors that you are immunosuppressed. Do not suddenly stop taking prednisone if you are on it.
We continue to monitor the situation and will post/tweet any updates regarding our scheduled events. At this time there are no changes to the National Scleroderma Conference in September.
Danielle Rice, a PhD Candidate in Clinical Psychology at McGill University, will discuss her research in understanding the unique experiences and challenges that caregivers face while caring for a loved one with scleroderma, as well as useful support services and the ways they can be developed. See Danielle at the 2020 National Scleroderma Conference. Register at www.sclerodermaconference.ca
Concerned Canadians march on Parliament Hill today to fight for fair drug prices, calling for Health Canada to stop new federal price restrictions proposed by the Patented Medicine Prices Review Board which will block innovative treatments and access to live-saving therapies.
📷: Doug Earle
One week remaining for your chance to WIN your 2020 National Scleroderma Conference registration. Join us for two days of programming in beautiful Niagara Falls, Ontario. Winner to be drawn March 16th. For more information about the conference, and to register, visit www.sclerodermaconference.ca
This is your chance to visit beautiful Niagara Falls! The 2020 Scleroderma Conference will be held at Sheraton on the Falls, Sept.18-19, right in the heart of all the action. Stay a few extra days and see the sights - you won't be disappointed. Popular attractions include Journey Behind The Falls, the Butterfly Conservatory, Whirlpool Jet Boat Tours, Ripley's Believe It or Not museum, and much more along Clifton Hill.
Register now for limited time Early Bird pricing to save $50: www.SclerodermaConference.ca
University of Toronto grad Dr. Shapera, Director of the Interstitial Lung Diseases Program at UHN Toronto General Hospital, also works with the Toronto Lung Transplant Program. His commitment has resulted in numerous teaching awards. Dr. Shapera will address ILD at the 2020 National Scleroderma Conference this September. Register now at Early Bird prices: www.SclerodermaConference.ca
This morning, alongside friends and allies, we united for the #RareDiseaseDay Breakfast at Queen's Park hosted by Canadian Organization for Rare Disorders. MPPs offered their support to revitalize Ontario's Rare Disease Strategy, including France Gélinas, MPP Nickel Belt, declaring, "it is time to consider the journey of a person living with a rare disease". Thank you to everyone who joined us today in the fight for our future.
Thank you for supporting our #BlueRibbon campaign this winter! Giving is a powerful way to remember a family member or person in your life touched by scleroderma. Your donation can improve quality of life and give hope to those living with scleroderma. Our community appreciates every dollar received. Please donate today. https://www.scleroderma.ca/donate
Scleroderma Canada's cover photo
Two weeks left to register for a chance to win a free 2020 National Scleroderma Conference registration. Bring a friend, family member or caregiver! Must be registered to win. Winner to be drawn March 16th.
Scleroderma Canada's cover photo
It's #RareDiseaseDay! Today we are joining hands across the globe and showing our support for the rare disease community, to raise awareness for millions living with rare conditions. Are you a #SclerodermaWarrior? #ShowYourStripes!
Announcement for those who had planned to attend the 6th Systemic Sclerosis World Congress in Europe - FESCA has announced the cancellation of the March 5-7 convention due to concern over COVID-19 and some scleroderma patients' compromised health. A new date (possibly July) will be announced.
#RareDiseaseDay is right around the corner, and one of the most cruel and painful is #scleroderma. Help us continue incredible research that gives hope to thousands of Canadians by donating to the #BlueRibbon campaign. www.canadahelps.org/en/dn/43619
RSVP for the Rare Disease Day 2020 Breakfast Reception at Queen’s Park, hosted by our friends at the Canadian Organization for Rare Disorders. Patients, families, caregivers and other members of the public can enjoy a breakfast and meet with members of Canadian Parliament on Tuesday, March 3rd, in recognition of Rare Disease Day. Visit the website and reserve your spot. https://www.raredisorders.ca/wa_3693647/
Dr. Janet Pope is Professor of Medicine, Rheumatology Western University and Division Head in Rheumatology at St. Joseph's Health Centre, London. Her research includes studies in scleroderma - outcome measurements, clinical trials & disease manifestations. Her accomplishments have earned her the Distinguished Investigator Award from the Canadian Rheumatology Association, among others.
See Dr. Pope at the 2020 National Scleroderma Conference: www.sclerodermaconference.ca
Register for the National Scleroderma Conference 🍁 before March 16th and you'll be entered into a draw for one FREE conference registration. With 2 days of excellent programming including both scleroderma experts and patients, what are you waiting for? Sign up today at Early Bird pricing: www.sclerodermaconference.ca
Rheumatologist & epidemiologist Dr. Hudson, McGill Department of Medicine, is a founding member of the internationally recognized Canadian Scleroderma Research Group. She has contributed to over 100 peer-reviewed papers including a number of landmark papers, and established several international collaborations with leading scleroderma experts. We are thrilled to have Dr. Hudson as a Keynote speaker at the 2020 National Scleroderma Conference. Don't miss your chance to secure your passes with Early Bird pricing, on now: www.sclerodermaconference.ca
Wonderful to see Dr. Brett Thombs and his work with SPIN being recognized. Don't miss Dr. Thombs and his Keynote address at this year's National Scleroderma Conference in Niagara Falls.
The Arthritis Society has shone a spotlight on Dr. Brett Thombs and SPIN group's pioneering SPIN-HAND study which encompasses scleroderma-related hand function impairments. Catch Dr. Thombs as he presents a Keynote speech at this year's National Scleroderma conference in Niagara Falls, and read about his research at https://arthritis.ca/what-we-do/research/research-impact-snapshots/the-disabling-impacts-of-scleroderma.
Betsy Craig is an Award-Winning Leader, CEO, Speaker and Author living with scleroderma. Betsy owns and operates MenuTrinfo LLC, a million-dollar, leading restaurant consulting company. We're proud to have her close the 2020 National Conference with a humourous and inspiring Keynote that will fill you with courage.
Early Bird prices are in effect. Register for the conference today at www.sclerodermaconference.ca
DYK: scleroderma patients are at risk for developing heart issues. Pulmonary arterial hypertension is a restriction of the blood vessels in the lungs that forces the heart to work much harder, eventually weakening it. Learn the symptoms of PAH during #HeartMonth
Click to learn about Joyce's story 👇
"Music is always on, and I'm always moving" - Scleroderma can't keep Joyce from dancing.
Researchers, clinicians, patient advocates and rare disease advocates including Durhane Wong-Rieger gathered this week in Ottawa at the Fight For Our Lives event. The panel discussed the impacts of new drug pricing regulations on access to medicines and how the pricing reform may harm rare disease patients.
A proposed National Pharmacare Plan promises to eliminate gaps in Canadians’ coverage for prescription drugs. At the same time, sweeping changes to drug pricing regulations passed in the last days of the last parliament put into question Canadians’ access to new medicines. Is a single public plan built on lower drug prices and no new drugs the best solution to universal drug coverage?
Panelists for the event include:
Tom Clark, Former National News Anchor (Moderator)
Durhane Wong-Rieger, President and CEO of CORD
Tania Stafinski, University of Alberta
Chris Mcleod, Canadian Cystic Fibrosis Treatment Society
Dr. Yves Bolduc, former Quebec Minister of Health
The panel will discuss not only federal price controls and national pharmacare but also access to medicines for diseases, the proposed Canada Drug Agency and the challenges and opportunities inherent in inevitably high-priced “curative” therapies.
For millions of Canadians, we are literally in the “fight for our lives.”
Registration is now Open! Enjoy Early Bird pricing to the 2020 National Scleroderma Conference. Pricing includes 2 days of programming with scleroderma experts, keynote speakers, entertainment, and more.
Registration is now Open! Enjoy Early Bird pricing to the 2020 National Scleroderma Conference. Pricing includes 2 days of programming with scleroderma experts, keynote speakers, entertainment, and more. https://www.sclerodermaconference.ca/event-details/2020-scleroderma-conference
This September the Scleroderma Society of Ontario hosts the 2020 National Scleroderma Conference in Niagara Falls. With over 250 delegates from Canada, the United States and around the world, this is a must-attend, international event.
Watch for Early Bird pricing. Registration opens this month, and we will announce it on Facebook and Twitter. www.sclerodermaconference.ca/
The SPIN group is aiming to increase the number of support groups available to people with scleroderma through the SPIN-SSLED support group leader training program. Be a beacon of hope to those in remote areas with no support network. Contact SPIN at [email protected]
Whether you are a patient or caregiver, please take a moment to complete this important survey. Boehringer Ingelheim is seeking to better understand the patient community’s online information needs and welcomes your responses. Answers are anonymous and aggregated data will be available to survey respondents.
The Countdown is on - #RareDiseaseDay is one month away! Did you know 300 million people worldwide live with a Rare Disease? Visit https://rarediseaseday.org/country/ca/canada to find out about Rare Disease Day events happening here in Canada.
A study published in The Journal of the European Academy of Dermatology and Venereology by researchers in Germany suggests genetic testing can differentiate between scleroderma and its overlapping syndromes, like MCTD. Read more: https://sclerodermanews.com/2020/01/24/genetic-testing-differentiates-scleroderma-and-its-overlap-syndromes-study/
Durhane Wong-Rieger, President & CEO of Canadian Organization for Rare Disorders and an expert panel discuss National Pharmacare, access to medicines for diseases and more at The Fight For Our Lives: Perspectives on the New Federal Price Controls for Medicines, Feb 4 in Ottawa.
Tickets and info 👉 https://economicclub.ca/events/display/the-fight-for-our-lives-perspectives-on-the-new-federal-price-controls-for-medicines
41 King William Street, Suite 203
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