Hope in Action – a Column by Kristen Wheeden

Will You Join Us on Rare Disease Day 2022?

Rare Disease Day on Feb. 28 is a critical day, although every day is Rare Disease Day when you are living with or caring for someone who has one. The experience is often isolating and lonely, but on this special day, we are all urged to come together as…

From Porphyria Caregiver to Rare Disease Advocate

As a caregiver and a rare disease advocate, I find seemingly endless opportunities to transform hope into action. It can be overwhelming because I want to have my heart and my hand in all of them! My primary role is a mom to my son, Brady, who lives with…

Putting Hope Into Action After My Son’s Porphyria Diagnosis

On a bright day in mid-2009, I covered my son Brady, then 3, from head to toe and tucked him deeply in my arms. We rushed into a new doctor’s office — our potential diagnostic superhero — to discover what was causing my son’s horrific pain. Having been to countless…