Hello TSW Community!

We are so thrilled to be able to share so much good news and progress with you. The process for creating change is definitely not a quick one and is all about the long game. But we are on the cusp of so many years worth of work finally bearing fruit. 

First of all, we are nearing completion of the programming phase of our TSW Patient Registry with NORD (National Organization for Rare Disorders). A patient registry allows us to to get a true count of how many people are affected by TSW Syndrome world wide, which will establish prevalence. It will also allow us to follow people over time, to show the usual course and natural history of TSW. What does TSW look like for the majority? What are the main symptoms – especially that would differentiate TSW from Atopic Dermatitis or severe eczema? We will also be able to collect some information on treatments to see if there is anything helpful for the majority, or not helpful. This is a lengthy process, so stay tuned for more details as our launch date approaches!

What we really need now to keep this project running are donations. Once we launch, we will need to pay a $5000 fee. Please help if you are able. If you are not able, please share in your social networks ways others can give. We need everyone to get this project done! ITSAN is also in need of volunteers to do various tasks. If you have a skill you think might be helpful, please reach out! Right now, we need the most help with content creation for social media.

Thank you all for your support – we can do this together!