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Scleroderma Canada

41 King William St., Suite 203
Hamilton, Ontario L8R 1A2
Toll Free 1-866-279-0632
info@scleroderma.ca

www.scleroderma,ca

Scleroderma-Society-Canada-Societe-Canad

VOLUNTEER

Volunteers are the foundation of Scleroderma Canada. From fundraising to event management and advocacy, we rely heavily on the dedication of our many philanthropists. In return, our volunteers meet new people, develop new and valuable skills, gain work experience, build confidence and positive self-esteem and contribute to the community.

 

Contact your provincial organization to find out how you can make a difference in your community and in the lives of those Canadians affected by scleroderma. We will find a role that suits your interests and availability. 

ORGANIZE AN EVENT

Determine the type of event you wish to organize in support of Scleroderma Canada and develop an action plan to help you accomplish all the necessary tasks in a timely manner. Connect with us to review your plan, request supporting materials and align on priorities.

 

Major event planning milestones typically include:​​

Determining the type of event

  • Life celebration (i.e.: birth, birthday, wedding, anniversary, graduation)

  • Fitness challenge (i.e.: walk/run/bike)

  • Memorial

  • Community event (i.e.: bake sales, car washes, breakfasts)

  • Other

Budget development

  • Projected expenses & revenues

Recruiting volunteers

Securing the venue

Event Promotion

  • Scleroderma Canada website

  • Social media

  • Personal fundraising web page

  • Invitations

  • Local news

  • Other

ADVOCATE

Simply put, advocacy is used to increase awareness and effect positive change. Advocacy efforts at Scleroderma Canada are geared towards ensuring positive outcomes for scleroderma patients by enhancing public awareness of the disease and by influencing decisions within political, economic and social institutions within Canada.

 

We empower patients, caregivers, family and friends, and healthcare professionals to find a voice on issues that are important to our scleroderma community. Your engagement can make a significant difference in this work. Advocacy comes in many forms and can include reaching out to elected officials, building public awareness and building networks with community leaders and healthcare practitioners.

GOVERNMENT ADVOCACY AVENUES:

  • Meet with your local provincial/territorial government representative

  • Email your Premier and Health Minister 

  • Share your story with the media. Contact Scleroderma Canada for more details.

  • Leverage social media

    • Like & share our Facebook posts

    • Favourite & retweet our tweets

    • Use #PHysicianchoice when you post on issues related to Pulmonary Arterial Hypertension

    • Tag Scleroderma Canada in your posts

    • Facebook: Scleroderma Canada

    • Twitter: @SclerodermaCAN

    • Instagram: @sclerocan

 

PULMONARY ARTERIAL HYPERTENSION ADVOCACY EFFORTS:

Scleroderma Canada supports all scleroderma patients and families affected by the various forms of pulmonary hypertension (PH), including Pulmonary Arterial Hypertension (PAH). PAH is a common complication of scleroderma and can be very severe in patients with this connective tissue disease.

 

In 2015 CADTH (Canadian Agency for Drugs and Technologies in Health) released its Therapeutic Review Recommendation Report for Drugs for PAH. The potential impact of this report could severely restrict physicians’ ability to exercise individual clinical judgement, which is essential to the proper treatment of PAH.

 

As a result of this report, Scleroderma Canada has partnered with the Pulmonary Hypertension Association of Canada to advocate for all PAH patients. Advocacy efforts are aimed at reminding our provincial and territorial governments that lives could be at risk if these recommendations are heeded. We need your help to ensure that all Canadians affected by PAH have access to every treatment available in Canada. Click here to learn more.