RARE Foundation Alliance Member Spotlight: Jennifer Meyer

August 3, 2021

Organization(s) you represent: President, Dent Disease Foundation

What led you to the rare disease community?
My little boy was diagnosed with Dent Disease in 2017 and then a short 6 months after that my oldest son was diagnosed with Type 1 diabetes. This was a very challenging time in my life
unfortunately, so I decided to try to make a difference and became involved as a member of the
Dent Disease Foundation and set out to find a cure for my son.

What do you think are the areas that are lacking in the community (specific to your org or in
general)? What are some of the pain points?
Collaboration. That is what I feel very strongly about, that we in rare diseases are lacking. I know it
sounds cliche, but it is absolutely true in the fact that in order to make a difference in rare diseases,
we as a community, as a whole, need to work hand in hand. This includes everyone involved,
families, physicians, scientists, researchers, pharma, and, of course, patients. I know this is feasible,
it is just harder to accomplish because of the fracturing that is currently the standard.

What are your areas of expertise?
I have been a Registered Nurse for 11 years and have extensive medical experience. I currently work
as an RN – Diabetic Educator for a non-profit in my community where we serve patients that are
uninsured, mostly undocumented, food-insecure patients.

I am currently in school for my Master’s in Nursing Science which will enable me to practice as a
Nurse Practitioner when I am finished. I have dedicated my career to both of my children and their
medical conditions. Being the President of the Dent Disease Foundation enables me to help everywhere I can with Dent disease and to put funds towards research for a cure. Helping others live
their best life with Diabetes is all for my older son.

I live to help others, that is why I was placed on this earth. 

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