Aplastic Anemia & Myelodysplasia Association of Canada

Contact: info@aamac.ca
Population served: Supports patients and caregivers across the country who are living with aplastic anemia, myelodysplastic syndrome (also called MDS or myelodysplasia) and paroxysmal nocturnal hemoglobinuria (PNH).
Other language(s) : French
Mission:

In 1987, the concerned parent of a child with aplastic anemia founded the Aplastic Anemia Family Association of Ontario. One of the very first goals of the Association was to advocate for the formation of a national bone marrow donor registry in Canada. Today, the Aplastic Anemia and Myelodysplasia Association of Canada is a federally incorporated and registered national charity with the ambitious goal of providing a seamless support network for every Canadian patient, family member, friend and concerned healthcare provider dealing with aplastic anemia, myelodysplasia or PNH.

Aplastic Anemia & MDS International Foundation

Contact: 800-747-2820
Population served: Patients with Aplastic Anemia, Myelodysplastic Syndromes (MDS), Paroxysmal Nocturnal Hemoglobinuria (PNH), and related bone marrow failure diseases and their families
Mission:

To support patients and families worldwide living with aplastic anemia, myelodysplastic syndromes (MDS), paroxysmal nocturnal hemoglobinuria (PNH), and related bone marrow failure diseases

Resources include:

• Free educational materials, the latest medical and treatment information, and clinical trials information
• Online Learning Center, with webcasts, interviews with experts, interactive learning modules, live webinars
• Guidance for living well with bone marrow failure diseases
• Support Connection enabling patients to talk with trained patient volunteers who share treatment experiences and provide emotional support
• Communities of Hope: Volunteer-led local groups connecting patient and families for peer support and information exchange
• Matthew Debono Memorial Scholarship Fund for students who are U.S. residents age 35 and under, diagnosed with a rare bone marrow failure disease (aplastic anemia, MDS or PNH) and who meet all other eligibility guidelines.

Canadian Cancer Society

Contact: 866-786-3934
Population served: Cancer patients and caregivers in Canada
Other language(s) : French, Spanish, Chinese, Punjabi. They also have fact sheets available in Cree, Hindi, Italian, Ojibwe, Oji-Cree, Persian, Polish, Portuguese, Spanish, Tamil, Tagalog, Ukrainian and Urdu.
Mission:

The eradication of cancer and the enhancement of the quality of life of people living with cancer in Canada; is a national community-based organization of volunteers. Programs vary by location although cancer information and support services are available Canada-wide.

• Provides information about cancer and its treatment
• Limited, short-term assistance towards cancer-related transportation, at times through a volunteer driver program
• Limited, short-term assistance for accommodation expenses, and/or accommodation at a Canadian Cancer Society lodge
• In some provinces/territories, partnerships may be able to assist with access to symptom management drugs
• CancerConnection connects people living with cancer and caregivers with trained volunteers who offer encouragement and share ideas for coping – all from their unique perspective as someone who’s been there
• The online community, CancerConnection.ca, helps people who have cancer, cancer survivors and caregivers share their experiences and build supportive relationships
• Community Services Locator is a searchable database of over 4,000 cancer-related services and resources Canada-wide.

CORD Canadian Organization for Rare Disorders

Contact: info@raredisorders.ca
Population served: CORD provides information to individuals, and links to other rare disorder support groups and organizations from Prince Rupert, British Columbia to St. John’s, Newfoundland.
Mission:

Canada’s national network for organizations representing all those with rare disorders. CORD provides a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders. CORD works with governments, researchers, clinicians and industry to promote research, diagnosis, treatment and services for all rare disorders in Canada.

1 in 12 Canadians has a rare disorder. Many others are affected or at risk but remain undiagnosed and unaware. CORD provides information to individuals, and links to other rare disorder support groups and organizations from Prince Rupert, British Columbia to St. John’s, Newfoundland.

Cancer View Canada

Contact: 877 360-1665
Population served: Canadians affected by cancer
Mission:

Cancer View Canada connects Canadians to online services, information and resources for cancer control.  It is an ever-evolving portal that brings together resources for cancer prevention, screening, treatment, and supportive, palliative and end-of-life care.

Through its collaborative tools, Cancer View Canada also links people in the Canadian cancer community to each other.

The Myelodysplastic Syndromes (MDS) Foundation, Inc.

Contact: 800-637-0839 or 609-298-1035
Population served: Patients with MDS, caregivers, health professionals worldwide
Other language(s) : Spanish, French, German, Danish
Mission:

A multi-disciplinary, international organization devoted to MDS support, research, treatment, and education for patients, caregivers, physicians, nurses and other health care providers. The organization is based upon the premise that international cooperation will accelerate the process leading to the control and cure of these diseases.

• Provides disease information, insurance information and publications

• Offers patient advocacy groups, research funding, and professional educational initiatives

• Referrals to MDS Centers of Excellence and clinical trials

• Conducts international symposia.