Annie-Danielle Grenier

Rare Disease Health Leader Annie-Danielle GrenierI raise awareness, educate and advocate for people living with rare and invisible diseases, having a few myself. I have hypermobile Ehlers-Danlos syndrome, autoimmune polyendocrinopathy (type II) and an unspecified systemic autoinflammatory disorder, along with over a dozen comorbidities, some of which are rare as well like gastroparesis or corneal ectasia.

I work mostly as an expert patient, public speaker, and creator of Ma vie de zèbre (My Zebra Life), a blog now turned a website that I started in 2013 because I couldn't find much information in French (and none relevant to Québec) about Ehlers-Danlos syndromes –the only diagnosis I had at the time– and I wanted to change that.

I’ve had the chance to be asked to share my story and my opinion in the media over the years, be it through newspapers, TV or radio interviews and podcasts, and had stories published online and in a book. I’ve been a community health leader with the Social Health Network since 2021, where I started as a collaborator for the chronic dry eye community, before also joining the rare disease community.

I’m very active (mostly in French but also in English) on Twitter and as Ma vie de zèbre on Facebook and Instagram.

I work a patient partner as well, involved on various committees and in a few research projets, where I bring the rare disease patient’s perspective in doing things like help change policies, co-create surveys, educate future healthcare professionals, and much more.

I used to be a freelance translator (in French and English) and studied in arts and literature as well as in event organization. In addition, I worked many years in show business (on stage, management, and production) and have a bachelor's degree in psychology.

My atypical life experience gives me a different vision that I love to share with people and hopefully inspire, reminding others that life's obstacles are not obstacles to happiness!

Click here to read all of Annie-Danielle's articles on RareDisease.net.

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