The Dalglish Family 22q Clinic

Many adults with 22q11.2DS have multiple health concerns and long lists of medications. Some of them also have intellectual disabilities and are therefore unable to adequately explain their health conditions. If these patients need medical help urgently, or if they encounter medical professionals who are not familiar with 22q11.2DS, they (or their family members) have a hard time providing crucial information to those who try to help.

To solve this problem, our Clinic has been offering personalized medical information cards to our patients. These are wallet-sized, laminated paper cards that show emergency contact information on one side and personal medical information on the other.

As we reported in our article in May 2020, card users have found the card to be useful in multiple ways. They provide necessary information, speed up interactions with professionals, and help avoid repeat storytelling. If you would like to obtain an electronic copy of the article, please send your request to 22q@uhn.ca. Thank you.

We began this quality improvement project in late-2014, and have issued medical information cards to 87 patients (85 of whom have standard 22q11.2 deletions) as of March 2025. We also continue to update the cards for them. If you are a patient at the Dalglish Clinic and would like to receive a card, please contact our clinic at (416) 340-5145.

Samantha D’Arcy, our Registered Dietitian, has been hosting nutrition webinars for our patients and families. Here are the recordings.

• All about Blood Sugars and Cholesterol
• All About Calcium
• All About Appetite and Cravings

Also check out our 2025 online nutrition education sessions for Ontario residents!

We invite you to join us for our upcoming Peer and Caregiver Support Groups! These groups are a chance for patients and caregivers alike to get together to meet, discuss questions, successes and challenges. Our most recent event took place online in April, 2024.

We facilitate two simultaneous groups:

• A group for parents or caregivers - an opportunity to talk to other parents and caregivers about concerns, challenges, and successes.
• A group for our adult patients - a chance to meet each other, participate in some fun exercises and to discuss topical subjects supported by our staff.

All patients and caregivers must be registered with our Clinic to join in the group. At this time, only residents of Ontario may participate in these groups, due to unfortunate limitations on allied health professions.

As soon as we have the date for the next session, we will post the information here.

“How will 22q symptoms affect my life as I become an adult?” is a common question for many of our patients and their families.

The Dalglish Family 22q Clinic, in collaboration with the the SickKids Hospital 22q11 Deletion Syndrome Clinic, offers a 22q Transition Clinic several times per year. This program is one of the first in the world to focus on transition to adult care for patients with 22q. This full day program gives teens with 22q and their caregivers information about adult care and enables a smooth transition from the 22q Clinic at SickKids to our Clinic at the Toronto General Hospital.

Our next Transition Clinic will take place on Tuesday, April 15^th, 2025.

The International 22q11.2 Foundations’ Annual 22q at the Zoo – Worldwide Awareness Day (22q at the Zoo) is an international initiative to raise awareness about chromosome 22q differences. The Toronto event is co-hosted by the 22q Deletion Syndrome Clinic at SickKids Hospital and the Dalglish Family 22q Clinic. The focus of the day is for individuals with 22q, their families and Clinic staff to socialize, network, and raise awareness of 22q in the community. Participants also have the chance to join in fun activities with their friends and families and enjoy a day at the Toronto Zoo.

Our next event will place at the Toronto Zoo on Saturday June 7^th, 2025. Please visit our events page for more information. Please note that the Toronto event does not take place on the same day as the the international event.

Lisa Palmer (Social Worker), Joanne Loo (Education and Communication Officer), and Samantha D’Arcy (Registered Dietitian) at our Resource Table on June 2^nd, 2024.

The 22q11.2 Family / Parent Conference is an annual family-organized event held at SickKids in Toronto. This conference gives individuals with 22q and their families the chance to learn more about 22q and to meet other families sharing the same experiences.

The 2020 Parent Conference took the form of monthly, virtual events from November 2020 to May 2021. The theme was Mental Health Matters. Dr. Anne Bassett, our Clinic Director, spoke on March 4^th, 2021, while Lisa Palmer, our social worker, spoke on May 15^th, 2021.

The Parent Conference hosted an online event called “22q and Strategies for School Success” on January 29^th, 2022. Donna Cutler-Landsman, an educational consultant, shared her expertise in educating children with 22q.

For more information, please visit www.22qfamilies.org.

The 13^th Biennial International 22q11.2 Conference took place in person in Óbidos, Portugal from Tuesday July 16^th to Thursday July 18^th, 2024. The next conference will take place in Greece in 2026. See the Meetings page of the website of the 22q11.2 Society for more information.

See also:

• Dr. Anne Bassett And Our Clinic Team Received Special Service Awards At International Conference
• Dr. Christina Blagojevic Receives The Junior Investigator Award
• Multiple Team Members Received Top Presenter Awards At International Conference
• Portugal 2024 Conference Program (Dalglish Clinic team members highlighted)

From left to right: Dr. Erik Boot, Samantha D’Arcy, Lisa Palmer, and Dr. Anne Bassett received the Special Service Award on behalf of our whole team.

Our participation in recent conferences

• Whistler, BC, Canada (2018)
• Split, Croatia (2022)