Ontario is expanding clinics for people living with rare diseases to help improve access to specialized care and treatment.

Ontario Health Minister Dr. Hoskins

Dr. Eric Hoskins, Minister of Health and Long-Term Care was joined by Michael Coteau, Minister of Children and Youth Services at Toronto General Hospital, to announce the opening of a new Ehlers-Danlos Syndrome (EDS) clinic and the expansion of inherited metabolic disorders and red blood cell disorders clinics.

Run by University Health Network and The Hospital for Sick Children (SickKids), the EDS clinic will help strengthen care and support for adult and paediatric patients living with EDS. Primary care providers will now have a single point of contact to receive information and guidelines on related signs and symptoms, receive advice and feedback from clinical experts on diagnosis and treatment options, and make referrals to specialists including geneticists, paediatricians and pain management professionals.

Ontario is also expanding University Health Network’s inherited metabolic disorders and red blood cell disorders clinics. This will improve access to care and treatment for patients with disorders such as Sickle Cell Disease, Thalassemia and Phenylketonuria. The clinic will also help improve the transition of 172 patients from paediatric to adult care from SickKids to University Health Network.

Improving services and supports for patients with rare diseases is part of the government’s plan to build a better Ontario through its Patients First: Action Plan for Health Care<http://www.health.gov.on.ca/en/ms/ecfa/healthy_change/>, which provides patients with faster access to the right care; better home and community care; the information they need to live healthy; and a health care system that is sustainable for generations to come.


“I am pleased that these clinics will help improve access to the appropriate care and treatment for adult and paediatric patients living with Ehlers-Danlos Syndrome, inherited metabolic disorders and red blood cell disorders such as Sickle Cell Disease. People living with these rare and complicated diseases face challenges on a daily basis and our government is committed to providing the services and supports that they require. These clinics are another example of how Ontario is putting patients first to provide them with better access to high quality of care closer to home.”
— Dr. Eric Hoskins, Minister of Health and Long-Term Care

“Sickle cell disease disproportionately affects people who are of African ancestry, or who identify as Black. As Minister Responsible for Anti-Racism and Minister of Children and Youth Services, I’m extremely pleased our government is helping to enhance care for this community and others. Today’s announcement means care will be streamlined, ensuring better access for those with rare diseases.”
— Michael Coteau, Minister of Children and Youth Services

“The government’s support for this clinic is much appreciated and will certainly benefit patients and their families as they transition seamlessly from the pediatric setting at SickKids to longitudinal care provided by our multidisciplinary adult Ehlers-Danlos team here at UHN. Ehlers-Danlos Syndrome requires well-coordinated care provided by specialists throughout a lifetime. Teamwork between two leading organizations provides optimally integrated, world class coordination of care for Ehlers-Danlos patients in Ontario.”
— Dr. Peter Pisters, President and CEO, University Health Network.

“We are delighted to partner with University Health Network and the Ministry of Health and Long Term Care to create this joint EDS program. This unique clinic will provide care to child, youth and adult patients with Ehlers-Danlos Syndrome, and importantly for SickKids patients, will ensure the smooth transition of care to the adult health system.”
— Dr. Michael Apkon, President and CEO, The Hospital for Sick Children


* Ontario is making an initial investment of $991,000 to support the start-up and operation of the EDS clinic.

• EDS is a group of inherited disorders that affect the connective tissue supporting many body parts, from skin to muscles and ligaments. People with the disease are prone to chronic pain, joint dislocation and lost vision. EDS affects approximately one in 5,000 people and requires a combination of efforts to help diagnose and treat patients effectively.

* Ontario is investing $622,500 to expand University Health Network’s inherited metabolic disorders and red blood cell disorders clinics.

• Phenylketonuria is an inherited metabolic disorder that causes an amino acid called phenylalanine to build up in the body, which can harm the central nervous system and cause brain damage.

• Red blood disorders are different types of genetic disorders affecting red blood cells and include Sickle Cell Disease and Thallassemia.

• In January 2016, Ontario developed a Clinical Handbook<http://www.health.gov.on.ca/en/pro/programs/ecfa/docs/hb_sickle.pdf> to help broaden clinical knowledge about best practices for treating patients with Sickle Cell Disease.

• Ontario is currently co-leading a pan-Canadian Rare Disease working group with British Columbia and Alberta to develop a national strategy to improve access to pharmaceuticals for rare diseases and address their high costs.


* New Clinic for People Living with Ehlers-Danlos Syndrome<http://health.gov.on.ca/en/news/bulletin/2016/hb_20160229.aspx>
* Ehlers-Danlos Expert Panel Report<http://health.gov.on.ca/en/common/ministry/publications/reports/eds/eds_expert_panel_report_en.pdf>
* Ontario Launches Working Group to Benefit People Living with Rare Diseases<http://health.gov.on.ca/en/news/bulletin/2016/hb_20160902.aspx>
* Patients First: Action Plan for Health Care<http://health.gov.on.ca/en/ms/ecfa/healthy_change/>
* Quality-Based Procedures Clinical Handbook for Sickle Cell Disease Vaso-occlusive Crisis<http://www.health.gov.on.ca/en/pro/programs/ecfa/docs/hb_sickle.pdf>

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