As someone living with a rare and chronic condition I feel strongly about raising awareness and helping others with similar health problems.

Black and white image of Karina, a woman with shaved head. She is wearing glitter eye shadow and red lipstick.
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Raising awareness for EDS: Karina is a guest in several podcasts and blogs!

Ehlers-Dan… What? Most people - and sometimes even medical professionals - do not know how to spell Ehlers-Danlos syndrome at all, let alone that they would know anything about the various symptoms that are associated with the rare illness.…
Jacob Fraker, a young man with light brown, short hair and a beard is standing in a park and smiles.
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A Rare Disease Advisory Council and Ombudsperson for California!

A few weeks ago, I met Jacob Fraker, a legislative aid of Assemblymember Susan Eggman at the California State Capitol. More importantly, Jacob is part of the rare disease community as well. He has been living with the rare genetic condition…
Karina is holding a sign saying: Yes, we care!

Yes, we care! – A campaign for children with rare diseases

The Care-for-Rare Foundation contacted me a few weeks ago and asked if I wanted to join their new campaign. Of course, I wanted to! And I would like to recommend this project to you. Why? Because the Care-for-Rare Foundation is committed to…