Publication date: 18 Apr 2025
RareShare serves to advance progress in rare diseases by sharing information from its members and from trusted scientific sources. An important part of this are the individual stories of patients, family members and disease advocates which inspire and assure those affected by a rare disorder that they are not alone and that there is hope for better days ahead. If you have a story that you would like to share, reach out to the RareShare team via email at rareshare-support@raregenomics.org. We will evaluate each submission and select those that may be of greatest interest to our members.