As parents of children with rare diseases, we tried to support our children as best we could. There was limited or no resources available. We connected with other organizations and we learned to adapt to our rare disease.
We sought professional guidance from therapists, but sessions were expensive. This meant we needed to be strategic with the paid services. We found ways to incorporate strategies into our daily life at home.
We know the importance of early intervention. Our goal is to bring these strategies to caregivers so they can create the same supportive lifestyle.
Our first event in our five-part series launches in honor of Rare Disease Day on February 19. This event will focus on physical therapy and combine it with educational activities.
The Caregiver Lifestyle Series is a collaborative project by Hrabrisa and Teach RARE. Both non-profit organizations provide a similar mission and caregiver lifestyle strategies on different sides of the globe. They even share a nearly identical story of a daughter suffering from a rare neurotransmitter disorder. Their organizations have joined forces and experience to create an exceptional series of events.
By caregivers and for caregivers.
We are creating a high-quality online educational support series for caregivers in rare diseases, undiagnosed diseases, and special needs communities.
Each event in the series will take place on the 3rd Sunday of each month and focus on a specific therapy. Professionals will provide multi-tiered activities and strategies that caregivers can implement at home to support progress while making memories with their child.
The RARE Voice is a podcast dedicated to rare diseases. Through our personal journey and interactions with others, we share the voice of the rare.
In July 2022, we met Adam’s family in Houston, Texas. However, their journey started many
