This meet-up has been scheduled to help families fill in the Global Patient Registry. Please be sure to visit our webpage at purasyndrome.org/registry to ensure your account is set-up prior to the meeting. On that same page is a checklist of items that would be helpful to have gathered prior to the meeting as well. […]
Young siblings, please join us Sunday, November 3 from 4:00-5:00 pm UTC+0 (UK time) for our first young (ages 4-8) sibling meet up! If you haven't yet signed up for our sibling email list, please click here. For more sibling information and resources, click here. Questions? Contact our Sibling Ambassador Chrissie Brock at [email protected] Please […]
This meet-up has been scheduled to help families fill in the Global Patient Registry. Please be sure to visit our webpage at purasyndrome.org/registry to ensure your account is set-up prior to the meeting. On that same page is a checklist of items that would be helpful to have gathered prior to the meeting as well. […]