Media
Rare Disease Support
What life is like as a parent caring for a child with a rare disease.
Calgary families mark Rare Disease Day
CTV, February 29, 2016Television
URL: https://calgary.ctvnews.ca/calgary-families-mark-rare-disease-day-1.2797916
Living with a rare disease can make families feel isolated, and government support is sometimes not very forthcoming.
“A lot of kids barely qualify, having a rare diseases, for any sort of provincial assistance just because they don’t quite fit the official descriptors for having a disability,” said Rachel Martens mother of a child with a rare condition. “Yet their day to days are so utterly severe that they definitely do need assistance."
Rachel Martens: Advocacy & Social Media
Patient Critical Coop, July 12, 2018Radio/Podcast
URL: https://patientcritical.com/rachel-martens-advocacy-social-media/
Rachel Martens is a mother, parent engagement facilitator, patient research advocate & social media pioneer in Calgary, Alberta. We discuss how social media helped her learn to care for her son’s rare disease, and later became her voice to advocate for others.
Sharing a Perspective Only a Mother Can Bring to the UN CRPD
Kids Brain Health Network, August 16, 2018Online
Was offered an opportunity to share about my experiences this past June travelling to New York to speak at the United Nations. The subject matter was rights-based approaches to childhood disability in Canada.
Adding Experience to Expertise – How Parents can Impact the Relevance of Research
Kids Brain Health Network, July 26, 2018Online
Parents of children with disabilities are stepping up to take a powerful role in shaping relevant, impactful research. Their greatest asset: their own personal, lived experiences of caring for their child.
Knowledge Exchange and Discovery in the Age of Social Media: The Journey From Inception to Establishment of a Parent-Led Web-Based Research Advisory Community for Childhood Disability
by Russell DJ, Sprung J, McCauley D, Kraus de Camargo O, Buchanan F, Gulko R, Martens R, Gorter JW
Published by jmir.org
November 11, 2016
Details how social media can be an outlet for creating a community and connecting families in a greater capacity for more nuanced, in-depth qualitative research partnerships.
Knowledge Exchange and Discovery in the Age of Social Media: The Journey From Inception to Establishment of a Parent-Led Web-Based Research Advisory Community for Childhood Disability
by Russell DJ, Sprung J, McCauley D, Kraus de Camargo O, Buchanan F, Gulko R, Martens R, Gorter JW
Published by jmir.org
November 11, 2016
Details how social media can be an outlet for creating a community and connecting families in a greater capacity for more nuanced, in-depth qualitative research partnerships.
Biography
Rachel Martens was parent to a medically complex disabled child for fourteen years who passed away in 2020. It’s this lived experience that created opportunities for accessible options to engage and collaborate with researchers in childhood disability related studies. Rachel is the host of My Complex Parenting Podcast which aims to talk about parenting from a lens that many share, spending part of their family life in pediatric hospital settings. She has an invested interest in disability rights for children and has spoken both nationally and internationally on subjects related to child health. This included a number of opportunities to speak to United Nations committees on the status of human rights for disabled children in Canada.