Meet the Team (from left to right):
Allison Knickle, Kari Magnussen, Marianne Vivien, and Taylor Laut.
We are 2nd year genetic counseling Masters students at Joan H. Marks Graduate Program in Human Genetics Sarah Lawrence College in New York. Allison, Kari, and Taylor hail from across the Great White North (Canada), and Marianne is originally from California (but has been dubbed an honorary Canadian).
Rare diseases are individually rare, but collectively affect millions of people worldwide. More so, those diagnosed with an N-of-1 disease lack the resources and support provided by other disease communities. Individuals with a newly diagnosed rare disease, or their parents/caregivers, actively seek up to date and reliable information about their rare conditions, for which most healthcare providers have zero or limited experience. As a result, parents often become the real experts of these ultra-rare disorders and thus become their child’s only advocate, fighting to find even just one other person in the world with a similar diagnosis. We were inspired by several families' stories and we hope that this website serves as a resource for anyone needing a little guidance, or a place to start.
We want you to know that everyone has a voice, and that you are your biggest advocate.
Special Acknowledgements:
- Laura Hercher MS, CGC Director of Student Research, Joan H. Marks Graduate Human Genetics Program, Sarah Lawrence College
- Cheryl Scacheri MS, CGC Senior Clinical Genomics Manager at Courtagen Life Sciences
- Dr. Matthew Might PhD, Advisor, Undiagnosed Disease Network Coordinating Center, Harvard University
And special thanks to the Joan H. Marks Graduate Program in Human Genetics Sarah Lawrence College