Events

Jul 19, 2019 to Jul 29, 2029

Not only do we have a new LAL-D Aware Information and LAL-D Community website, but we are creating an LAL-D Aware Patient Registry.

What is a Patient Registry?

A Patient Registry is a way to collect health information so researchers can learn more about a condition. You will be asked to answer questions about your health and symptoms of the condition, but your name and contact information will not be included, so the health information provided will not be linked to information that could identify you. Participation in the LAL-D Aware Registry is voluntary. You do not have to participate, but we welcome you if you choose to do so.

Stand by for more LAL-D Patient Registry Information coming soon...

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GLOBAL GENES RARE PATIENT ADVOCACY SUMMIT 2019

September 18th-September 20th at the  Sheraton San Diego Hotel & Marina.

GLOBAL GENES 2019.

Meet the rare disease comminuty, family, patients, caregivers, researchers and clinicians. 

Learn about new developments and research for rare diseases. 

There is strength in numbers and this is a great opportunity to learn and get involved.

See you there!