Address: Toronto General Hospital, 8 Norman Urquhart, Room 802, 200 Elizabeth Street, Toronto, Ontario, M5G 2C4 Canada Phone: (416) 340-5145 Fax: (416) 340-5004 Email:firstname.lastname@example.org Website:http://www.22q.ca/
The Dalglish Family 22q Clinic
The Dalglish Family 22q Clinic for adults with 22q11.2 deletion syndrome (22q) was created in 2012 at the Toronto General Hospital, University Hospital Network (UHN) in Toronto, Canada, through a generous donation by the Dalglish Family and Weston Foundation.
The Clinic is the first to focus on Adults with 22q11.2 deletion syndrome, providing specialized, patient-centred care to adults and their families. The Clinic also provides educational services for trainees and health care providers. In addition, the Clinic is involved in world-class research to improve the quality of life for individuals and families affected by the syndrome.
A typical visit to the centre for the first appointment takes up to 4 to 6 hours. Patients and families usually meet with the social worker, dietitian and doctor, all of whom specialize in 22q. The Patient Flow Coordinator contacts families ahead of time to explain the process.
Follow-up visits are generally shorter than the first visit, but this will depend on the type of appointment and which specialist(s) are being seen.
The Clinic team is dedicated to providing the most comprehensive and seamless care to patients, families and caregivers. The aim is to plan care with different specialties all in one visit (for example: psychiatry, cardiology and endocrinology).
The following specialty areas are provided and/or coordinated through the Dalglish Family 22q Clinic: genetics, psychiatry, cardiology, endocrine, neuropsychology, GI/nutrition, social work and neurology. The Clinic serves patients from age 17 years and up. The Clinic has experience with over 360 adults with 22q.
The Clinic focuses on providing services for Canadian patients with 22q. If you would like to refer an international patient to the Clinic please check the websiteof the International Patient Program for updates, particularly with respect to hospital policy on patients from the US.
Toronto, ON – 22q Deletion Syndrome Clinic
Address: The Division of Clinical and Metabolic Genetics, The Hospital for Sick Children, 555 University Avenue, Toronto, Ontario M5G 1X8 Phone: (416) 813-6390 Fax: (416) 813-5346 Website
Marseille 22q center was created in 2005 and has seen approximately 300 patients with 22q. The age of patients ranges from newborn through late adulthood. The center follows 22q patients throughout their lifetime, and has also developed a network of specialists competent in 22q adults, particularly psychiatrists and endocrinologists.
Specialties served at the clinic include Cardiology, Developmental Pediatrics, Endocrinology, ENT (this includes craniofacial/cleft), Genetics, Immunology, Neuropsychology, Ophthalmology, Orthopedics, Plastic Surgery, Psychiatry, Speech Pathology, Audiology, Dental, General Pediatrics, Hematology, Nephrology, Pulmonary and GI/ Nutrition.
The group has been involved in research for 22q11.2 deletion syndrome since 1993, and is part of the International Consortium on Brain and Behavior in 22q11.2 deletion syndrome. Our clinic is part of Reference Center for Developmental Anomalies, which belongs to the European Reference Network ITHACA.
The Medical Genetics center is located at La Timone Children Hospital (AP-HM, Marseille Public University Hospital) where the full range of pediatric specialties required for 22q babies are available, including pediatric surgery and NICU. The genetic clinic has a central role for 22q patients with coordination of their individualized care plan and periodic evaluations. We offer multidisciplinary clinic with pediatric experts in different fields when needed. AP-HM institute has developed shared medical files (DPI) accessible to all doctors through individualized and secured access in order to improve patients care. First visit in our center is usually scheduled within a month after referral. An appointment can be planned within the week, in case of necessity.
According to the babies’ symptoms, clinics with other specialists (ENT, cardiologist…) will be managed on the same day. During the clinic, doctors give attention to family concerns and perform a complete examination of the baby. Generally, blood sample will be performed (with parent consent) to confirm diagnostic and precise genetic counseling. An appointment with clinical psychologist may be planned on the same day or later.
The clinical genetics unit is involved in the French and the European rare disease reference networks for Neurodevelopmental Disorders, Intellectual Disabilities and Congenital Anomalies: AnDDI-Rares network and ITHACA ERN.
The center is located in the Children’s University Hospital of la Timone in Marseille, in the immediate vicinity of the hospital for adults. We work with a network of referent physicians in all medical and surgical specialties. Recently we developed a new partnership with a reference center for rare psychiatric disorders.
The center was created in 2001 and has served over 350 individuals, seeing patients from newborn through adulthood. The clinic provides comprehensive treatment for the diverse needs of individuals with 22 11.2 syndrome. The center’s services include evaluation and treatment programs for their patients. The Behavioral Neurogenetic Center is one of the world’s leading research and treatment centers for 22q syndrome, and collaborates with several centers in the United States and Europe.
The department is involved with other specialists in the hospital including: genetics endocrine, and nephrology; therefore they are able to offer a service of “Full Clinic Day” that includes several meetings with various experts, according to the needs of the patient.
A patient’s first visit will consist of an initial one-hour intake meeting with Prof. Gothelf or Dr. Serur. The focus of the meeting is to assess the patient’s needs, and create a treatment and follow-up protocol. At the end of the meeting, recommendations are given, including relevant referrals with the top experts at the Sheba Medical Center.
The clinic supports an Israeli organization of families with individuals with 22q11.2 syndrome. The clinic holds various activities, lectures, and annual social events for the families.
Gothenburg, Sweden – Queen Silvia Children’s Hospital
General Pediatrics & Immunology: Solveig Oskarsdottir, MD
Address: Department of Pediatric Immunology The Queen Silvia Children’s Hospital- Sahlgrenska University Hospitaal Rondgatan 10 SE 41685 Goteborg Sweden
Phone: 46 31 343 5220