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We are here for you, so that you do not face your worries alone. 

 The Foundation is dedicated to supporting patients, families, and advocates in the Loeys-Dietz syndrome community. We offer peer support and resources for living well with LDS. 

Contact us today at 1-888-LDS-FCAN or info@loeysdietzcanada.org.

What is peer support?

Peer support is a type of support from someone who has lived a similar experience. 

Our peer support is provided by Lindsay, a member of the Foundation with peer support training, Loeys-Dietz syndrome in her family, and experience with diagnosis, medical treatment and complications, as well as caregiving.

All conversations are confidential. We are committed to protecting your privacy and personal information. Find the details in our consent form and privacy policy.

What resources do we offer?

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 other organizations. We do not provide social, health, or medical services nor are we responsible for medical or other referred services provided by third parties.  

Additionally, the private and community-run Facebook group, Loeys-Dietz Families, is a safe place for patients and their loved ones to find support. 

This page offers a preview of relevant resources. If you don’t see what you’re looking for, or would like to add a resource to our directory, please contact us today at 1-888-LDS-FCAN or info@loeysdietzcanada.org.  

Find resources for Loeys-Dietz syndrome:

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 us at 1-888-LDS-FCAN or info@loeysdietzcanada.org.    

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

  1. The Fix

478 Granville St.

Summerside, PEI

C1N 4K6

Phone: 902-724-3104

Email: info@thefixpei.ca

Find it online

  1. 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

  1. 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

  1. 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

  1. 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

  1. 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

Support Groups:

  1. Loeys-Dietz Families Facebook Group

Find it online

  1. Loeys-Dietz Syndrome Support Group

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

Find it online

  1. Pain Management Support Group, The Marfan Foundation

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

Find it online

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

English and French.

Find it online

  1. Canadian Directory of Genetic Support Groups

Find it online

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

Find it online

  1. 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

  1. Caregivers Support Group, Aortic Hope

For caregivers to people with aortic disease.  

Find it online 

  1. 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

Find it online

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

Find it online

  1. Government of Canada Benefits Finder

Find it online

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

Find it online

  1. Registered Disability Savings Plan, Government of Canada

Find it online

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

Find it online

  1. Canada Pension Plan Disability Benefit, Government of Canada

Find it online

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

Find it online

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

Find it online

  1. Northern Health Travel Grants, Government of Ontario

Find it online

  1. Hope Air

Email: mail@hopeair.ca

Find it online

  1. Financial Support, Heart and Stroke Foundation

Find it online

  1. Head to Toe Document of LDS Signs and Symptoms

Find it online

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

Find it online

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

Find it online

  1. Factsheets on LDS
  1. LDS Medical Vocabulary

Find it online

  1. 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

  1. Factsheet on Joint Hypermobility, CHEO

Find it online

  1. Transitioning from Youth to Adult Healthcare

Find it online

  1. Tips for Physiotherapy, Dr. Márcia Perretto

Find it online

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

Find it online

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

Find it online

ACROSS CANADA (5)
  1. Canadian Coalition for Genetic Fairness

Find it online

  1. Pro Bono Resources in Canada

Find it online

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

Find it online

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

Find it online

  1. 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

  1. Pro Bono Ontario

Phone: 1-855-255-7256

Find it online

  1. 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

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 us 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

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

Find it online

  1. Orphanet Directory of Related Organisations, Worldwide

Find it online

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

Find it online

  1. Genetic Aortic Disorders Association (GADA) Canada

Find it online

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