Updates from our Patient/Family-Centered Working Groups: January 2022

Patient and Family Stakeholders

Accord Alliance, in partnership with the TRN and its sites, held its first ever network-wide Family Day Peer Support meeting. We plan to continue to offer these days of support for patients and families every quarter. Look for communication on days and times from your DSD provider teams.

Patient and Family Education

A repository of web-based educational and support resources for people with DSD and their families was created by healthcare providers and advocates in the DSD TRN. The repository, Lend A Helping Hand, was updated in 2021 and is available online and as a free booklet than can be downloaded: http://www.accordalliance.org/resource-guide/.