
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 was held in honor of Rare Disease Day. We will host an event on the 3rd Sunday of every month for a total of 5 events and one in-person meetup. Our next and final event will be on June 18th, focusing on behavioral therapy and how to 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 occur 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.
An outsider looking in may have just seen parents coming to learn, therapists offering free