The Snow Foundation and I have been working together to create a private online Wolfram syndrome community. This community will help those living with Wolfram syndrome find individuals who are on the same journey. This Wolfram syndrome community will help patients and their loved ones start conversations, share treatments, experiences, challenges, and feelings. All information will be kept strictly confidential within the participating Wolfram families.
If you are interested in joining this community, please visit this link and fill out a quick survey. This will allow us to collect some basic information to set up your participation in this community. We anticipate having the community up and running over the next few months.
Take care,
Fumi Urano