Resource Directory
Our Resource Directory offers resources to help you and your family live well with Loeys-Dietz syndrome.
We provide information on medical, paramedical, psychological, financial, social, educational, legal, and genetic testing resources, as well as information about clinical trials and other organizations.
This page is a preview of the resources we offer. If you don’t see what you’re looking for, or would like to add a resource to our directory, please contact our Support Centre today at 1-888-LDS-FCAN or info@loeysdietzcanada.org.
Find:
Psychological and Social Resources
Clinical Trials and Research Studies
Medical Resources
Find a clinic specializing in genetics, cardiology, or connective tissue disorders like Loeys-Dietz syndrome.
To find a clinic knowledgeable about connective tissue disorders and specializing in orthopedics, neurology, women’s health, obstetrics, fertility, otorhinolaryngology, and more, contact our Support Centre at 1-888-LDS-FCAN or info@loeysdietzcanada.org.
Paramedical Resources
Paramedical resources include physical therapy, occupational therapy, kinesiology, chronic pain, massage, naturopathy, wellness, and other services.
Across Canada (2)
1. Resources for Canadians Living with Chronic Pain, Government of Canada
1. Resources and Clinics for Canadians Living with Chronic Pain, Loeys-Dietz Syndrome Foundation Canada
In Alberta (1)
1. Vida Health and Wellness (Physical Therapy)
Key person: Mercedes Eustergerlin (Physical Therapist)
609 14 Street Northwest
Suite #208
Calgary, Alberta
T2N2A1
Phone: 403-237-0211
Email: info@vidahealth.ca
In Atlantic Canada (3)
1. Reconnect Health Centre & Physiotherapy
25 Gorge Road
Moncton, New Brunswick
E1G 1B1
Email: info@reconnecthealth.ca
2. The Fix
478 Granville St.
Summerside, PEI
C1N 4K6
Phone: 902-724-3104
Email: info@thefixpei.ca
3. InMotion Health Centre
Key person: Pamela Dolomount (Business Manager)
Location 1:
179 Hamlyn Road
St.John's, Newfoundland
A1E 5Z5
Location 2:
496 Topsail Road
St.John's, Newfoundland
A1E 2C2
Phone: 709-747-5945
Email: pam@inmotionhealthcentre.ca
In British Columbia (3)
1. VGH Centre for Cardiovascular Health (Kinesiology)
Key person: Taira Birnie (Lead Case Manager)
2775 Laurel St.
6th Floor
Vancouver, British Columbia
V2W 1X1
Phone: 604-875-4111 x61258
Fax: 604-875-5794
Email: taira.birnie@vch.va
2. Ygeia Therapy (Naturopathic Doctor)
Key person: Dr. Daisey Kent (Naturopathic doctor)
416 Jubilee St.
Duncan, British Columbia
V9L 1X2
Phone: 250-510-1910
Fax: 250-597-8881
Email: info@daiseykentnd.com
3. Ygeia Therapy (Massage Therapist)
Key person: Bianca Thoma (Massage Therapist)
394 Duncan St.
Duncan, British Columbia
V9L 3W4
Phone: 778-748-0645
Email: info@ygeiatherapy.com
In Manitoba (1)
1. Pure Lifestyle
1129 Empress Street
Winnipeg, Manitoba
R3E 3H1
Phone: 204-338-7873
In Ontario (2)
1. Pillars of Wellness
Key person: Laurent Pinci (Co-owner & founder)
100 Plains Rd W #16
Burlington, Ontario
L7T 0A5
Phone: 905-637-4000
Fax: 905-637-4922
Email: info@pillarsofwellness.ca
2. Toronto Physiotherapy
Key person: Maryam Davari (Physical Therapist)
1246 Yonge Street
Suite 306
Toronto, Ontario
M4T 1W5
Phone: 416-922-5118
Fax: 647-436-1926
In the United States of America (2)
1. Healy Physical Therapy & Sports Medicine (Physical Therapy; Offers tele-health)
Key person: Dr. Michael P. Healy (Physical Therapist)
927B Warren Ave
East Providence, RI
02914, United States
Email: healyptmarketing@gmail.com
2. Actify Physiotherapy & Wellness (Physical Therapy; Offers tele-health)
Key person: Dr. Márcia Perretto (Physical Therapist)
7000 W Palmetto Park Rd
Suite 220
Boca Raton, FL
33433, United States
Phone: 561-366-2435
Email: info@actifypt.com
Psychological and Social Resources
Support Groups:
1. Loeys-Dietz Families Facebook Group
2. Loeys-Dietz Syndrome Support Group
Meets virtually on the 2nd Thursday of every month at 7pm EST.
3. Pain Management Support Group, The Marfan Foundation
Meets virtually on the 4th Thursday of every month at 7pm EST.
4. Online Peer Support for People Living with Heart Disease and their Caregivers, Heart and Stroke Foundation Canada
English and French.
5. Canadian Directory of Genetic Support Groups
6. Loeys-Dietz Syndrome UK/Ireland/Channel Island Families Facebook Group
7. Support Group for Aortic Disease, Aortic Hope
For people living with aortic disease, their caregivers, and their medical professional.
Meets virtually on the first Tuesday of every month at 2pm EST and on the last Wednesday of every month at 7pm EST.
8. Caregivers Support Group, Aortic Hope
For caregivers to people with aortic disease.
9. Bereavement Support Group, Aortic Hope
For people who have lost loved ones to aortic dissection.
Other:
1. Find a Therapist Anywhere in Canada, Psychology Today
2. List of Helplines Across Canada, Crisis Services Canada Directory
Financial Resources
1. Government of Canada Benefits Finder
2. Disability Tax Credit (DTC), Government of Canada
3. Registered Disability Savings Plan, Government of Canada
4. Child Disability Benefit (CDB), Government of Canada
5. Canada Pension Plan Disability Benefit, Government of Canada
6. Family Caregiving Benefits for Children and Adults, Government of Canada
7. Employment Insurance (EI) Sickness Benefit, Government of Canada
8. Northern Health Travel Grants, Government of Ontario
9. Hope Air
Email: mail@hopeair.ca
10. Financial Support, Heart and Stroke Foundation
Educational Resources
1. Head to Toe Document of LDS Signs and Symptoms
2. Loeys-Dietz Syndrome Do’s and Don’ts Factsheets, VASCERN
3. Loeys-Dietz Syndrome (Article by Dr. Loeys and Dr. Dietz)
4. Factsheets on LDS
5. LDS Medical Vocabulary
6. Preparing for Surgery
Read advice from adults on preparing for cardiothoracic surgery
Read advice from children and teenagers on preparing for cardiothoracic surgery
7. Did You Know? Factoids about LDS
8. Factsheet on Joint Hypermobility, CHEO
9. Well on Your Way: Helping Youth Transition to Adult Healthcare
10. Transition Timeline (for Youth Transition to Adult Healthcare and Life)
11. My Care Path (Online Informative Tool about Chronic Pain for Ages 12 to 17)
12. Knowing but Not Knowing: Finding out about your baby's heart problem before they are born
13. Tips for Physiotherapy, Dr. Márcia Perretto
Legal Resources
Across Canada (5)
1. Canadian Coalition for Genetic Fairness
2. Pro Bono Resources in Canada
3. Genetic Discrimination and the Workplace: An Update on the Evolving Legal Landscape
4. Frequently Asked Questions regarding the Convention on the Rights of Persons with Disabilities
5. Lawyer Locate
In Quebec (1)
1. The Centre of Genomics and Policy
Affiliated with McGill University.
740 Avenue Dr. Penfield
Suite 5200
Montreal, Quebec
H3A 0G1
Phone: 514-398-8155
Fax: 514-398-8954
In Ontario (3)
1. ARCH Disability Law Centre
55 University Avenue
Toronto, Ontario
M5J 2H7
Phone: 416-482-8255
Phone Toll-Free: 1-866-482-2724
TTY (teletypewriter): 416-482-1254
TTY Toll-free: 1-866-482-2728
Fax: 416-482-2981
Fax Toll-free: 1-866-881-2723
Email: archgeneral@lao.on.ca
2. Pro Bono Ontario
Phone: 1-855-255-7256
3. Legal Aid Ontario
Phone: 416‑979‑1446
Phone Toll free: 1‑800‑668‑8258
TTY (teletypewriter): 1‑800‑855‑0511
Email: info@lao.on.ca
Genetic Testing Resources
Each province has its own genetic testing guidelines. If you would like to learn more, ask your primary care provider for a referral to a genetics clinic and contact our Support Centre at 1-888-LDS-FCAN or info@loeysdietzcanada.org.
1. Information about Genetics and Loeys-Dietz Syndrome, including LDS-causing mutations, genetic testing, and how your family may be affected
2. Why Genetic Testing is Important for Loeys-Dietz Syndrome
Clinical Trials and Research Studies
1. Natural History and Genetics of Food Allergy and Related Conditions, National Institute of Allergy and Infectious Diseases (NIAID)
2. COVID-19 and Vaccine Survey, Johns Hopkins Medical Institutions
3. NIGMS Respiratory sample requests for VEDS, LDS, and Marfan Syndrome, Coriell Institute
4. Pathogenetic Basis of Aortopathy and Aortic Valve Disease, Indiana University
5. Complex Aortic Aneurysm Repair Using Physician Modified Endografts and Custom Made Devices, University of Massachusetts
Other Organizations
1. Orphanet Directory of Related Organisations, Worldwide
2. Loeys-Dietz Syndrome Foundation, United States of America
3. Genetic Aortic Disorders Association (GADA) Canada
