Special Programs and Events
In addition to medical and counselling appointments, our Clinic offers the following programs for our patients.
Medical Information Cards
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 84 patients (82 of whom have standard 22q11.2 deletions) as of June 2023. 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.
Nutrition Webinars
Samantha D’Arcy, our Registered Dietitian, has been hosting nutrition webinars for our patients and families. Here are the recordings.
Peer and Caregiver Support Groups
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. Here is the information for our next event:
When: Wednesday April 17th, 2024 from 2:00 pm – 3:00 pm
Where: Online. This is a virtual support group. The link will be sent out closer to the date.
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.
Please RSVP by April 10th, 2024 by calling 416-340-5145 or emailing 22q@uhn.ca.
Look forward to seeing you!
Transition Program
“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 most recent Transition Clinic took place on Tuesday, May 9th, 2023. Our next Transition Clinic is scheduled for Tuesday, April 16 th, 2024.
22q at the Zoo
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 take place at the Toronto Zoo on Sunday June 2nd, 2024! Please save the date!
Our most recent event took place at the Toronto Zoo on Sunday, June 4th, 2023. The weather was absolutely gorgeous, and everyone had a great time at this social event. Our team took the opportunity to provide families with the latest resources on 22q11.2 deletion and duplication syndromes.
Check out the photos!
Tracy Heung (Clinical Research Analyst), Samantha D’Arcy (Registered Dietitian), and Joanne Loo (Education and Communication Officer) at our Resource Table.
22q Family Conference / Parent Conference
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 4th, 2021, while Lisa Palmer, our social worker, spoke on May 15th, 2021.
The Parent Conference hosted an online event called “22q and Strategies for School Success” on January 29th, 2022. Donna Cutler-Landsman, an educational consultant, shared her expertise in educating children with 22q.
For more information, please visit www.22qfamilies.org.
Biennial International 22q11.2 Conference
The 13th Biennial International 22q11.2 Conference will take place in person in Silver Coast, Portugal from the early morning of Tuesday July 16th to the late evening of Thursday 18th, 2024. See the Meetings page of the website of the 22q11.2 Society for more information.