Because We Are Strong Creators & Guests

Theresa is a wife, mother, chronic pain fighter and rare disease advocate. Her son was born with Beckwith-Wiedemann syndrome and has inspired her efforts to help bridge the gap between the rare disease community and the rest of the world

In 2016 Kristine was an avid runner enjoying her career and life in her mid-20s. However, in late August 2016, she felt a sharp pain in her knee while on a run. That day was the end of life as she knew it. It was a slow take over as her body began a civil war with itself. Her journey has taken her on ups and downs mentally, emotionally, and physically as little information is known about the rare disease she is battling. From ountless doctor's appointments to trying to convince people who knew her that something was wrong physically and despite the negative test results she wasn’t crazy. She eventually was diagnosed with EDS as well as several other conditions and symptoms that have yet to have a formal name. Kristine felt alone and overwhelmed with grief for the life she once knew. She realized going through my journey that there wasn’t a space for me, she felt like she didn’t belong anywhere. So she created RARE. A brand with a purpose and a mission to create awareness around rare diseases and invisible struggles while at the same time giving back to find treatments and cures for the 7000 rare diseases affecting 300 million people worldwide. Kristine's compassion, kind spirit, and dedication make her an easy person to connect with. Kristine keeps it real, raw, and RARE. in her authentic weirdo way. She is RARE and she owns it.

Jenny Jones chronicles her life living with two rare diseases: Familial Adenomatous Polyposis and Short Bowel Syndrome in her blog Life’s a Polyp.