Rare diseases Foundation
I am a Mom to a beautiful 3 year old little girl that lives with Idic15. Prior to my daughter coming into my life, I worked as a Respiratory Therapist; working both in clinical care and various medical businesses. I have spent a lot of my time navigating the medical system both as an employee and patient advocate. My daughter's journey has given me many blessings, one of which is serving on the BOD of the Rare Disease Foundation. My focus is to help establish Parent 2 Parent meetings wherever they can help families find their rare community. I also remain passionate about our Microgrant program. It is my belief that these two programs can change the face of Rare Disease and in fact, already they already have.
I was lucky enough to have been the keynote speaker at the inaugural Rare Finds. It was there that I got to meet an amazing group of passionate people . I recently become a mom to a beautiful girl, and it has changed my life, I am so grateful for her. I was born with congenital fibular hemimelia and I know the stress that it caused my family. My hope is that through the Rare Disease Foundation we can connect families and help support research that will transform the world of rare disease care.
Isabel Jordan - Chair
I'm the mother of two; my oldest has been diagnosed with a ultra-rare or unique disorder. I've always done a lot of volunteer work at a variety of non-profit groups. I've worked as a freelance writer and as an environmental educator. My journey has brought me to being one of the founding members of the Rare Disease Foundation and now I am the Board Chair as well as an avid member of Vancouver Parent 2 Parent Resource Network. I know that together as a community we can make a large impact. Together we can support one another and make the changes necessary to see better treatment and research into rare diseases. This is what keeps me working on this every day. Well at least on the days when I'm not off playing with the kids. Or skiing.
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Provinces and territories talk health care — Canada NewsWire
Participating provincial and territorial health ministers discussed the significant challenges they face in providing new drug therapies to treat rare diseases.