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Sotatercept Survey Available for PAH Patients & Caregivers Until March 31

PHA Canada, along with our partners at Scleroderma Quebec, Scleroderma Ontario, and Foundation HTAPQ, is conducting a survey to learn how current pulmonary arterial hypertension (PAH) therapies affect you and your expectations for the new PAH therapy Sotatercept. You are invited to participate in this survey if you are a PAH patient or caregiver residing in Canada.

The survey results will be included in the patient/caregiver input we will provide to Canada/Quebec’s health technology assessment agencies – e.g., CADTH and INESSS.

Your participation in the survey is voluntary and anonymous. The survey takes approximately 5-10 minutes to complete.

Link to the survey: https://cutt.ly/iw08M2l4

Survey closes: March 31, 2024

 

“Scleroderma Quebec: Your Online Resource for Understanding and Managing Scleroderma”

Discover Scleroderma Quebec’s online platform, designed to help people living with scleroderma better understand their condition and find relevant information on symptoms, treatments, and research advancements, primarily in Quebec and Canada. Our site offers videos, informational sheets, and patient forums open to everyone…Read more

 

New:

Discover our educational sheets on scleroderma

At Sclerodermie Quebec, our mission is to support you in your understanding of scleroderma. In collaboration with health specialists, we have developed a series of educational sheets to enlighten you about this complex condition. These resources cover, among other things:

  • The basic principles of scleroderma, its manifestations, and treatment options.
  • A detailed analysis of the symptoms for a better understanding of their impacts.
  • The importance of emotional support and the value of support networks for living with resilience and hope.

These sheets are a complement to the advice of your health specialist, enriching your dialogue with professionals and helping you take an active role in your care journey.

We invite you to explore our educational sheets, designed to simplify access to information and equip you with the necessary tools for a comprehensive approach to managing scleroderma. Join our community to benefit from ongoing support and progress together, enriched by a network of mutual aid and knowledge exchange… Read more

 

New:

Scleroderma Quebec Support Groups

Explore the scleroderma support groups offered by Scleroderma Québec, led by trained volunteers who often are sufferers themselves. These spaces foster mutual support and provide strategies for managing life with the disease, welcoming newly diagnosed individuals, caregivers, or long-standing patients.

Commitment and Safety: Sessions focused on validated information about symptoms and treatments aim to strengthen your support network and enhance daily management of scleroderma. They assist in confidently navigating the disease’s complexities.

Important Notice for Participants: While providing emotional support and facilitating the exchange of experiences, our groups do not substitute for professional medical advice. Promoting treatments not approved by scleroderma specialists is prohibited, underscoring our commitment to practices validated by recognized experts.

For more information…Read more

 

New:

Patient-reported outcomes in scleroderma: why it matters?

This new educational sheet illuminates the management of scleroderma, combining clinical expertise and patient experiences. It highlights the use of questionnaires, such as HAQ, SF-36, and PROMIS-29 among others, incorporating patient experience into the medical evaluation. These tools provide a more comprehensive view of the impact of scleroderma, including physical, emotional, and psychosocial aspects.

These questionnaires, while complementary to clinical analysis, do not replace it but rather enrich the evaluation, promoting personalized care. The educational sheet illustrates how the combination of these methods improves the understanding and treatment of the disease.

We encourage consulting this educational sheet to understand the importance of a comprehensive medical evaluation, combining clinical expertise and patient experience, essential in the fight against scleroderma…Read more

 

Autoantibodies in scleroderma

Scleroderma is a complex disease that is the subject of extensive research to understand the pathogenic mechanisms and identify new therapeutic targets. This article focuses on the dysfunction of the immune system, specifically the particular antibodies found in the blood of people with scleroderma…Read more

 

Enhance Your Knowledge of Scleroderma with Our Informative Capsules

Created in February 2023, these capsules are notable for their relevance and accessibility, offering a valuable resource for those seeking to understand this condition. Watch them for an introduction to scleroderma, presented in a clear and expert manner, yet accessible for all audiences.

 

Please Note: Each capsule is accessible through the following links:

 

February 24, 2023 – Capsule 1 What is Scleroderma? Caroline Côté, spokesperson for Scleroderma Quebec, provides us with insights into this autoimmune disease. https://f.io/C8ROx9sf

 

February 24, 2023 – Capsule 2 What is Pulmonary Arterial Hypertension associated with Scleroderma? Caroline Côté explains the symptoms and manifestations of PAH.  https://f.io/BL6uvIyy

 

February 24, 2023 – Capsule 3 The Raynaud’s phenomenon is the most common symptom of scleroderma. Caroline Côté elaborates on this topic in this capsule. https://f.io/_4foHdGN

 

February 24, 2023 – Capsule 4 Caroline Côté, spokesperson for Scleroderma Quebec, explains pulmonary fibrosis, a condition characterized by shortness of breath or a dry cough. https://f.io/bi2DHLV4

 

February 24, 2023 – Capsule 5 Involvement of the digestive system, particularly the esophagus, is frequent in people with scleroderma. Discover more about digestive system symptoms in this animated capsule hosted by Caroline Côté, spokesperson for Scleroderma Quebec. https://f.io/JIwzo7OL

 

February 24, 2023 – Capsule 6 Caroline Côté, spokesperson for Scleroderma Quebec, discusses a severe kidney complication that occurs in 5% of patients: scleroderma renal crisis. https://f.io/qo-olWLC


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Testimonies

Discover the stories of people with the disease.

Last updated : March 15, 2024