The Unsung Heroes: Siblings Caring for Loved Ones with Rare Diseases

I Care for Rare

I Care for Rare is a podcast for parents and families of people living with rare diseases. It’s co-hosted by Sherrilynne Starkie and Sandra Markus, the visionary behind the I Care for Rare campaign and its mission to create a collective voice for individuals, families, and caregivers living with rare diseases, inspired by her experience caring for her adult son, Zach.

Joining them on the show is Helen Ries, the co-founder of Siblings Canada, part of the Canadian Centre for Caregiving Excellence, who shares her personal and professional insights on the critical role siblings play in caring for people with disabilities or rare diseases. Helen became the carer of her brother Paul when they lost their parents suddenly and in close succession.It’s been a 10-year journey in getting the support they need so that Paul can live his best life and, in turn, Helen and her husband can too.

Helen discusses the emotional and logistical challenges she faced in becoming Paul’s carer. She explains how caregiving has affected her relationship with her husband and her professional career and recounts her frustrating experiences with the developmental services system, where she encountered insensitive and outdated views about caregiving roles.

This experience fueled her determination to advocate for sibling caregivers and resulted in the foundation of Siblings Canada, an initiative aimed at supporting and connecting siblings who care for family members with disabilities.

The I Care for Rare social advocacy campaign seeks to drive reform in healthcare and community support systems for rare diseases. With over 3,000,000 Canadians affected by rare diseases, the absence of a comprehensive support strategy in Canada leaves many struggling to cope with daily life. The campaign, aims to unite and empower those affected by rare diseases, representing their collective voice.

This podcast highlights the essential work of CORD (Canadian Organization for Rare Disorders) and their "Canada's Rare Disease Strategy," a comprehensive plan with five key action points. These points include:

• improving early detection,
• ensuring timely care,
• enhancing community support,
• providing access to promising therapies, and
• promoting innovative research.

"I Care for Rare" calls on both the Canadian Federal and Ontario Governments to amend the Health Protection and Promotion Act, aligning with the recommendations outlined in CORD's Rare Disease strategy.

Helen Ries

Helen Ries is the co-founder of Siblings Canada, an initiative of the Canadian Centre for Caregiving Excellence. Siblings Canada raises awareness of the critical role siblings play in creating robust and responsive systems of care for people with disabilities. Helen is a community builder, innovator, and most importantly, a carer to her brother Paul. With a lifetime of advocacy, she has learned the power of full and inclusive citizenship for all community members. Helen holds an MBA from the University of Guelph.

We Need Your Help

Please help us make healthcare better for people with rare disorders in Ontario! We want to support individuals, families, and caregivers who are dealing with these uncommon health issues.

Healthcare in Ontario is falling behind. That’s why we're supporting Bill 129 to change the Health Protection and Promotion Act. This law will help put into action the good ideas from the Rare Disease Working Group Report, which was made on March 10, 2017.

Here’s how you can help:

• Sign MPP Bhutila Karpoche’s petition for an Ontario Rare Disease Strategy.
• Download our letters and send them to your government officials.

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