October 22, 2021
The LGDA now offers three options for patient/family support using Zoom: Drop In and SHare (DISH) – hosted one Saturday each month with Liz Bovee, an adult patient and LGDA volunteer, and Tracy Milne, a parent and Patient Programs Assistant. This is a time for anyone in the community to drop in to a zoom room to chat or ask questions. Drop in for a few minutes, or stay the whole hour. Young Adult Support Group – patient focused group for 18 to 26-year-olds Millennial Support Group – Patient-focused support group for 27 to 39-year-olds affected by complex lymphatic anomalies. Follow us on Facebook and check our page for coming events to get the links to join.
Read More...October 20, 2021
Welcome to the home of the International LGDA Registry for Complex Lymphatic Anomalies! We have been busy doing some significant updating to give our participants a better experience using the registry. We have updated the site to provide participants with a new experience and easier access to the aggregated, de-identified data through charts that show how you compare with other participants. You can even filter each chart for age and diagnosis to get more targeted insight into how you compare with others. The site is now mobile ready, meaning you can make changes to your profile, view the aggregated data, and take surveys on your mobile device with ease. The Registry is now focusing more closely on the four currently defined types of CLAs, GLA (formerly lymphangiomatosis), GSD, KLA, and CCLA. If you have not logged into your profile recently, we encourage you to do so, to update your profile information and retake the survey so we have the most current information about your diagnosis, symptoms, and other aspects of your experience with a CLA. If you have questions or need assistance, contact us at coordinator@lgdaregistry.org
Read More...September 04, 2014
PatientCrossroads Launches New Patient Registries. The new rare-disease registries arose from the NIH Global Rare Diseases Registry (GRDR) pilot program.
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