Just in time for Rare Disease Day: New SickKids/UHN clinic for EDS patients officially opens

Today is Rare Disease Day, an opportunity to raise awareness about the impact of rare diseases on the lives of patients and families. Patients with Ehlers-Danlos Syndrome (EDS) and other rare diseases now have improved access to coordinated care. On February 27, Dr. Eric Hoskins, Minister of Health and Long-Term Care and Michael Coteau, Minister of Children and Youth Services announced a $991,000 investment to support the operation of an EDS clinic run jointly by SickKids and UHN.  

The EDS program will support patients and families living with EDS by providing timely diagnosis, coordination of medical care, education, and expertise in the treatment and management of EDS. The clinic also aims to ensure a smooth transition from paediatric to adult health care. With clinic sites at both SickKids and Toronto General Hospital, the interdisciplinary program will develop over the coming year to include a medical lead, geneticist, nurse practitioner, advanced physiotherapist, a psychologist and a social worker.

“Building on our current expertise, we know that over time, through this dedicated clinic we will develop a deepened understanding of EDS and how to most effectively support patients suffering from this disease and their families,” says Karen Kinnear, VP Clinical.

The clinic will integrate ongoing research into clinical activities through a database that will be customized to capture all relevant data related to EDS in a systematic way.

Paediatric EDS patients should be referred through the SickKids Ambulatory Referral Management System and adult referrals are to be faxed to (416) 340-3792. All referrals will be triaged according to level of acuity and patient’s age before being directed to the appropriate care team.