About the clinic

The Dalglish Family 22q Clinic was formerly known as "The Dalglish Family Hearts and Minds Clinic". It is the first of its kind in the world, specializing in adults with 22q11.2 Deletion Syndrome ("22q11.2DS" or simply "22q").

The clinic provides individuals with 22q with care from healthcare experts from many specialties. We offer joint clinics with our colleagues in the world-renowned Toronto Congenital Cardiac Clinic for adults with congenital heart defects at the Toronto General Hospital, and collaborative care with other UHN specialists.

Our clinic is devoted to helping adults with 22q and their families. As of May 2020, we have served 353 individual patients and well over 1000 family members/caregivers. Together, they make over 1000 visits to the Clinic every year. We have also offered our services to over 50 patients in travelling clinics and welcomed over 150 patients and family members who graduated from the 22q Clinic at the Hospital for Sick Children through our transition clinics.

As a result of our success, the Dalglish Family 22q Clinic serves as an international model of adult care for 22q11.2DS. Our Clinic also is being proposed as a model for establishing adult 22q clinics around the world and in centres across Canada.

Vision

We aim to be a world leader in 22q, providing:

  • Specialized, individual-centred care to adults with 22q and their families
  • Excellence in education for patients, families, as well as trainees and health care providers
  • World-class research to advance our understanding of all aspects of 22q and improve care and outcomes.

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At the clinic we provide

Clinic waiting area

  1. Excellent care
    The knowledge from many health professions provides the best possible care. We make our decisions based on the best and most up-to-date research available. Our patients receive seamless and coordinated care in one Clinic.

  2. Education
    We will teach healthcare providers, students at all levels, the public, patients, and their loved ones about 22q and how to provide or obtain the best care possible.

  3. New treatments
    We will bring the best treatments and most up-to-date research findings to our patients and their families.

  4. New research
    We do cutting-edge research about 22q in our clinic and through related programs.

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Services

Our aim is to make appointments as convenient as possible for individuals with 22q, their families and caregivers by coordinating care with various specialities in one visit. The specialists include, but are not limited to:

  • Genetics expertise in 22q
  • Psychiatrist
  • Endocrinologist
  • Neurologist
  • Social Worker
  • Registered Dietitian
  • Cardiologists from the Toronto Congenital Cardiac Centre for Adults (TCCCA) are an important part of the Dalglish Clinic team.

TCCCA logo

The health care providers involved in the individuals' care will:

  • Provide timely and effective care for 22q
  • Provide regular and careful monitoring of their specific health conditions
  • Give individuals who have 22q and their caregivers information and specialized support
  • Connect them with local resources and peer support as needed
  • Coordinate care and help with advocating

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Referrals

Please see our section on Referrals. The forms are easy to complete!

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Appointments

Please see Clinic operations during the COVID-19 pandemic.

Please bring these things when you come to the Dalglish Clinic

For a printable (pdf) file of the above image, please click on the image itself.

First visit:

Your first appointment will usually take several hours. You will have the chance to meet with our social worker, dietitian and doctor(s), who all specialize in 22q. Our Patient Flow Coordinator will call you ahead of time to explain this process. We try to make the visit as simple and convenient for you and your family as possible. A Clinic staff member may call ahead to obtain helpful information to prepare for the visit.

In addition to providing patient care and education, we perform world class research to improve the quality of life for individuals and families affected by genetic conditions. If you are confirmed to have 22q or any other genetic diagnoses, we will invite you to participate in our research. Every individual and every family helps us learn more about 22q! Our research staff will provide you with more information. Thank you.

Follow-up visits:

Your follow-up visit will be shorter than your first visit, but this will depend on the type of appointment you have and which specialist(s) you are seeing. Plan for this visit to take about 1 to 2 hours.

Our team is dedicated to providing the most comprehensive and seamless care to patients, families and caregivers. We will do our best to plan your care with different specialties all in one visit (for example: psychiatry, cardiology, and endocrinology).

Teleconference:

The initial appointment must take place at the Dalglish Family 22q Clinic so that the in-person assessments can take place. For individuals who find it very difficult to travel to the clinic due to distance or mobility issues: the Director of the clinic may offer to see the individual via Telehealth's teleconferencing service for the second or subsequent appointments. Individuals can inquire about the possibility of receiving this service at their first appointment at the Dalglish Family 22q Clinic.

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