Did you know an outcome measure is an assessment used to determine if a treatment or therapeutic had an effect on how an individual feels or functions? The ORCA is just one type of outcome measure. 

Dr. Anjali Sadhwani, PhD breaks them down and why they are so important.

Learn more:

For those parents and caregivers who are interested in learning more about the current Clinical Trials and Observational studies in Angelman syndrome, be sure to check the link below often for updated information on the recruitment status and when locations are being added.

Learn more:

Danielle and Jeff Kowalski, parents of Bruce who lives with AS, held their annual Skating Angels hockey tournament again this year outside of Boston! Hosting a fundraising event involves a lot of energy and effort and we are so thankful for their annual support.

Read more and check out photos:

Are you a caregiver of a child with a rare disorder? Project WellCAST is now enrolling for our next wave!

Project WellCAST is a NIH-funded clinical trial focused on CAREGIVER and FAMILY well-being. If you are eligible for our research study, you’ll receive a FREE 12-week support program that can be completed 100% by telehealth!

Learn more about this study:

Thanks for reading, and please share this email with anyone in your network who would be interested in receiving our updates.