Posts by admin
The Unsung Heroes of Rare Disease: Caregivers
In the realm of rare genetic diseases, caregivers often find themselves wearing numerous hats – from being parents and transforming into caregivers performing tasks nurses, or other medical professionals perform, working multiple jobs, forego their own care due to lack of time or resources needed. The journey can be incredibly demanding, emotionally charged, and physically…
Read MoreStone Family – Aleese and Rane Stone’s Story
Listen to the Story Sanctuary Podcast: Aleese’s Family When my husband Rane Stone and I got married in May 2014, we knew we wanted to start a family. I found out early on that I was unable to get pregnant, so we decided to adopt. Fostering had always been on my husband’s heart, and I…
Read MoreAll Heart Award: Karelli
Congratulations Karelli! You are the first recipient of the All Heart Award. To hear more about Karelli and her family’s story check out their video:
Read MoreNominate a Helper
We want to hear from you. Who are the helpers in your Rare Disease Journey?
Read More