1. Toronto HHT (Hereditary
Hemorrhagic Telangiectasia)
Centre: Expanding the HHT Team
R. Pantalone, E. Leek, M.E. Faughnan
Toronto HHT Program, St. Michael's, Division of
Respirology, Department of Medicine,
University of Toronto, Keenan Research Centre, Li Ka
Shing Knowledge Institute, Toronto, Can

2. BACKGROUND
• 90% of the team members to date have been physicians
of varied specialties
• HHT patients would benefit from the involvement of
other allied health care professionals as is the case in
other rare and chronic diseases, such as cystic fibrosis.
• With new therapies for HHT, and patient’s interest in
lifestyle and natural health remedies; increasing needs
for expertise in pharmacy, nutrition and social care.

3. METHODS
• The current “first line” team in 2010 (nurse and
physician) considered areas of expertise that were not
addressed
• The pharmacist, dietitians and social worker were invited
to regularly attend an HHT bi-monthly meeting
• Agenda: case management and development of projects
for improving quality of care.
• A shared drive was established for all members of the
group to facilitate communication and team work

4. RESULTS
• Developed a process for obtaining insurance coverage for
HHT therapies: bevacizumab, tranexamic acid, IV iron.
• Developed and improved processes: IV iron protocols,
anemia management algorithm, bevacizumab infusion
protocol
• Developed educational materials for patients: Pumping
iron in HHT, Hazardous Health Products in HHT, and
Post Embolization Advice