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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:

Medical Resources

Paramedical Resources

Psychological and Social Resources

Financial Resources

Educational Resources

Legal Resources

Genetic Testing Resources

Clinical Trials and Research Studies

Other Organizations

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

Find it online

1. Resources and Clinics for Canadians Living with Chronic Pain, Loeys-Dietz Syndrome Foundation Canada

Find it online

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

Find it online

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

Find it online

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

Find it online

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

Find it online

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

Find it online

In Manitoba (1)

1. Pure Lifestyle

1129 Empress Street

Winnipeg, Manitoba

R3E 3H1

Phone: 204-338-7873

Find it online

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

Find it online

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

Find it online

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

Find it online

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

Find it online

Psychological and Social Resources

Support Groups:

1. Loeys-Dietz Families Facebook Group

Find it online

2. Loeys-Dietz Syndrome Support Group

Meets virtually on the 2nd Thursday of every month at 7pm EST.

Find it online

3. Pain Management Support Group, The Marfan Foundation

Meets virtually on the 4th Thursday of every month at 7pm EST.

Find it online

4. Online Peer Support for People Living with Heart Disease and their Caregivers, Heart and Stroke Foundation Canada 

English and French.

Find it online

5. Canadian Directory of Genetic Support Groups

Find it online

6. Loeys-Dietz Syndrome UK/Ireland/Channel Island Families Facebook Group

Find it online

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.

Find it online

8. Caregivers Support Group, Aortic Hope

For caregivers to people with aortic disease.  

Find it online 

9. Bereavement Support Group, Aortic Hope

For people who have lost loved ones to aortic dissection.

Find it online

Other:

1. Find a Therapist Anywhere in Canada, Psychology Today

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2. List of Helplines Across Canada, Crisis Services Canada Directory

Find it online

 

Financial Resources

1. Government of Canada Benefits Finder

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2. Disability Tax Credit (DTC), Government of Canada

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3. Registered Disability Savings Plan, Government of Canada

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4. Child Disability Benefit (CDB), Government of Canada

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5. Canada Pension Plan Disability Benefit, Government of Canada

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6. Family Caregiving Benefits for Children and Adults, Government of Canada

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7. Employment Insurance (EI) Sickness Benefit, Government of Canada

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8. Northern Health Travel Grants, Government of Ontario

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9. Hope Air

Email: mail@hopeair.ca

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10. Financial Support, Heart and Stroke Foundation

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Educational Resources

1. Head to Toe Document of LDS Signs and Symptoms

Find it online

2. Loeys-Dietz Syndrome Do’s and Don’ts Factsheets, VASCERN

Find it online

3. Loeys-Dietz Syndrome (Article by Dr. Loeys and Dr. Dietz)

Find it online

4. Factsheets on LDS

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5. LDS Medical Vocabulary

Find it online

6. Preparing for Surgery

Find it online

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

Find it online

8. Factsheet on Joint Hypermobility, CHEO

Find it online

9. Well on Your Way: Helping Youth Transition to Adult Healthcare

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10. Transition Timeline (for Youth Transition to Adult Healthcare and Life)

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11. My Care Path (Online Informative Tool about Chronic Pain for Ages 12 to 17)

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12. Knowing but Not Knowing: Finding out about your baby's heart problem before they are born

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13. Tips for Physiotherapy, Dr. Márcia Perretto

Find it online

Legal Resources

Across Canada (5)

1. Canadian Coalition for Genetic Fairness

Find it online

2. Pro Bono Resources in Canada

Find it online

3. Genetic Discrimination and the Workplace: An Update on the Evolving Legal Landscape

Find it online

4. Frequently Asked Questions regarding the Convention on the Rights of Persons with Disabilities

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5. Lawyer Locate

Find it online

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

Find it online

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

Find it online

2. Pro Bono Ontario

Phone: 1-855-255-7256

Find it online

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

Find it online

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

Find it online

2. Why Genetic Testing is Important for Loeys-Dietz Syndrome

Find it online

Clinical Trials and Research Studies

1. Natural History and Genetics of Food Allergy and Related Conditions, National Institute of Allergy and Infectious Diseases (NIAID)

Find it online

2. COVID-19 and Vaccine Survey, Johns Hopkins Medical Institutions

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3. NIGMS Respiratory sample requests for VEDS, LDS, and Marfan Syndrome, Coriell Institute

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4. Pathogenetic Basis of Aortopathy and Aortic Valve Disease, Indiana University

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5. Complex Aortic Aneurysm Repair Using Physician Modified Endografts and Custom Made Devices, University of Massachusetts

Find it online

Other Organizations

1. Orphanet Directory of Related Organisations, Worldwide

Find it online

2. Loeys-Dietz Syndrome Foundation, United States of America

Find it online

3. Genetic Aortic Disorders Association (GADA) Canada

Find it online