Pediatric Rare Disease
Families

Preserving memories
For the families who participate in the Collection, we are helping them preserve their memories through photos and films that create tangible memories they can hold on to forever.  We hope that they may find comfort and healing through sharing their stories. 

Providing support
There is often a lack of awareness and understanding about the challenges and struggles faced by children and families dealing with pediatric rare disease. This can lead to stigmatization, isolation, and limited support. Through sharing these stories we hope to cultivate compassion, kindness and connectedness when you step into a piece of these families’ lives. Beyond the participants, this Collection can support all pediatric rare disease families by helping them feel seen and supported through stories they can relate to. 

Advocacy
There are a lot of challenges rare disease families face that they want to advocate for, such as fighting with insurance to cover necessary medical needs, misdiagnoses, and medical kidnapping among many other challenges. We are not going to cover these topics directly in our work, but by sharing stories from a place of authenticity and vulnerability, people who have never experienced something like this are able to relate to something we all have in common – love and family. Through this point of connection we hope they can have a better chance at fighting for the causes they believe in.

General
Audience

Stories are meant to be shared
Another one of our objectives with this Collection is to develop a platform for these families to share their stories so they may be uplifted by inspiring others. This starts with families who relate to what they are going through because they have a child with a rare disease diagnosis as well as the participants’ friends and family. From there it may be shared with people outside of these circles who have never experienced what these families are going through. When someone shares a piece of their inner world with vulnerability and authenticity, that’s when we’re likely to see who we are or who we want to be reflected in them, and that has the power to create a space of empathy and understanding so rare disease families may feel more supported along their journey.