Together, we are strong.
The RareKC Project was founded in 2015 to activate a change in the lives of those challenged by rare genetic conditions and diseases.
While individual rare conditions have small patient populations, collectively the rare disease community is larger than the AIDs and Cancer communities combined. Despite its size, the community lacks a unified voice, as only 15% of rare diseases have organizations or foundations providing support or driving research.
The RareKC Project is bringing together families impacted by rare conditions in the Kansas City area. As individuals, our numbers are often too small to affect the significant changes needed to impact the future of rare. Our combined voices will create the advocacy network needed to achieve RareKC’s ultimate goal – to build a center of excellence for rare disease in Kansas City – the first of it’s kind in the country.
When I started writing under the pen name “Sick Chick” close to eight years ago I was insecure and ashamed about my illness. I banked on the safety of being anonymous to process my experiences on this platform. That did not last for long though as my blog gained popularity quickly even being picked up by an East Coast based nonprofit, and I started receiving invitations to speak at national conferences. I wish I could say that my first thought was excitement, but truthfully it was more along the lines of, “Oh $h*t.” Looking back this was the best thing that ever happened to me though. Patients are too often taught to cope, but I’ve found there’s a certain level of complacency in coping. I wanted to create a space to transform this into empowerment and unity for young women because being a young woman is hard enough without the added stress of illness - imagine having to fight your own body on top of fighting the patriarchy. So, after “coming out of the disability closet” about three years ago my personal blog became grew into this incredible international sisterhood. Welcome to the family!
Teddington Trust is a registered charity that offers support and guidance to those affected by Xeroderma Pigmentosum. Equally important to us are our number of ongoing special projects which look to address the issues of life quality and general wellbeing by delivering practical solutions. https://youtu.be/W8FCAJHc6-o