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 firstname.lastname@example.org. Thank you.
We began this quality improvement project in late-2014, and have issued medical information cards to 79 patients (78 of whom have standard 22q11.2 deletions) as of July 2022. 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.
Peer Support Groups
The Dalglish Family 22q Clinic holds peer support groups periodically for individuals with 22q and their parents or caregivers. It is a chance to get together to discuss questions, successes, and challenges.
We facilitate two simultaneous groups:
- A group for parents or caregivers - an opportunity to talk to other parents about concerns, challenges, and successes. Our interdisciplinary staff members will be in attendance.
- 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.
For those parents and caregivers unable to attend in person, an on-line weblink is offered to give access to the group from home. Please contact us for the weblink.
Our most recent Peer Support Group took place on Tuesday December 10th, 2019. Please stay tuned for the next event.
“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.
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 22q11.2 deletion syndrome. 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.
Toronto’s 2022 event recently took place on Sunday July 17th, 2022 at the Toronto Zoo. Please enjoy our photo collection from the event.
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.
If you have any questions about the series, please contact the organizers at email@example.com.
For more information, please visit www.22qfamilies.org.
Biennial International 22q11.2 Conference
The 12th Biennial International 22q11.2 Conference took place in person at Le Meridien Lav Hotel in Split, Croatia in 2022. Our team members presented our recent findings and led discussions in these meetings:
- Family Meeting – June 26 (Sunday) to 28 (Tuesday) [Program]
- IBBC and Network of the Americas – June 28 (Tuesday)
- Professional Meeting – June 29 (Wednesday) to July 1 (Friday) [Program]
Here is a photo of some members of our group:
From left to right:
- Samantha D’Arcy, Registered Dietitian
- Anne Bassett, Psychiatrist and Director of the Dalglish Family 22q Clinic
- Erik Boot, Research Associate and Former Dalglish Fellow
- Lisa Palmer, Registered Social Worker
- Lily Van, Psychiatry Resident
- Ania Fiksinski, Former Graduate Student