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Rare Disease

Linh Ngo in Sciwalk CafeMar 215 min read

True love

My Marfan tale — Part 4

Dislocated lenses (My Marfan Tale — Part 1)

Kiri Speirs4 days ago

I fully understand.

Danna Colman

Oh gosh that took my breath away. Uncertainty, waiting for a diagnosis or a prognosis can be so hard on your heart and soul. I’m glad you are still here. I can’t say I didn’t consider taking my own life after Zoe died, but having decided to live, I also had to choose how. I hope I’ve chosen to live in a way that she would want me to.

1 response

Susannah FoxFeb 224 min read

The Power of Public Access

Catherine is a woman I met through my fieldwork in communities of people living with rare disease. When she was…

1 response

Kendra Pape-GreenFeb 712 min read

What’s Wrong With How Canada Supports Rare Diseases — It Doesn’t

We Need Help — How Rare Diseases Effect Families in Canada, and What You Can Do

Though the chances of an individual being diagnosed with a specific rare disorder is, obviously, rare, it turns…

1 response

Linh Ngo in Tập Tầm VôngMar 56 min read

Lệch thể thủy tinh

Câu chuyện Marfan của tôi — Phần 1

Amanda RipsamJan 3110 min read

How do we get doctors to comprehend that a mom with out a phd knows more than they do ?

Please grab a cup of coffee or tea and get comfy.

I am going to share what I took away from a trip to the Capital building in Lansing Michigan on rare disease proclamation day from when I attended last year.