Learning Resource Database
These are resources that students find most useful for learning about chronic disease and disability from the patient perspective.
Rare Disease Resources
Myalgic Encephalomyletis & Fibromyalgia Society of British Columbia
Myalgic Encephalomyelitis – description of condition, symptoms, and treatment.
Review of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: an evidence-based approach to diagnosis and management by clinicians
A comprehensive article on ME. Talks about diagnosing ME/CFS and about its etiology, pathophysiology, management approach, long-term prognosis, and economic cost.
Myalgic encephalomyelitis: International Consensus Criteria
A journal article on Myalgic Encephalomyelitis.
BC Women’s Complex Chronic Disease Program
A groundbreaking program with a two-year waiting list.
ME/CFS and Fibromyalgia Self-Help Program
A non-profit foundation dedicated to bridging the gap in rare disease research and family and patient support.
Encouraging Patients with Rare Disease to Speak Up
A personal story about Ehlers-Danlos Syndrome (EDS) experience.
A foundation dedicated to the research for the rare disease, Neuromyelitis optica-NMO. Includes general information about NMO and resources.
The View From Here Column / NMOSD Your Way Podcast LinkTree
A written column and podcast created by women who live with NMO. By sharing their stories, they hope to inspire others with medical challenges to live life to the fullest.
NephCure offers resources for health care professionals and people living with nephrotic syndrome, FSGS, IgAN, and other rare, protein-spilling kidney diseases. Resources include education, patient stories, and patient navigation services.
*Family and Patient Support* A non-profit foundation dedicated to bridging the gap in rare disease research and family and patient support. Current research projects and support initiatives are highlighted on their page along with a number of fundraising opportunities.
National Organization of Rare Disease
This resource includes a database of 1,200+ rare diseases (including physiology, treatments, resources) for healthcare workers, practitioners, patients, and families.
Resources by Condition/Disability
Arthritis Research Canada provides access to arthritis specific research and opportunities to participate in research.
The Arthritis Society is committed to educating healthcare professionals in the most up-to-date arthritis identification, care and management best practices. This website provides excellent resources for health care professionals looking for modules or workshops to strengthen their understanding about arthritis and how to shape treatment plans for patients with arthritis.
*Healthy Living* The Arthritis Foundation provides a range of information for patients with arthritis looking for tools and support with their journey with arthritis.
Pain BC aims to enhance the well-being of all people living with pain through empowerment, care, education, and innovation.
Vancouver’s CHANGEpain centre provides evidence-based pain and function recovery services to help people in pain.
The MS Society of Canada offers a variety of programs to help people affected by multiple sclerosis effectively manage and cope with the disease. Additionally, they hold workshops and educational sessions for health care professionals, care givers, and individuals with MS across Canada.
The MS Knowledge Network is the Multiple Sclerosis Society of Canada’s hub of knowledge and navigators, providing consistent, quality MS information and support for anyone in Canada.
MS Society – Quality of Life Equipment Grants
Quality of Life Equipment Grants: a sector within the MS Society that assists by providing equipment or financial assistance to acquire new pieces of equipment or pay for repairs on current equipment (based on financial need).
The MS Society of Canada’s blog contains various written blog posts from community members describing their story with MS related to topics of community, advocacy, education, giving, living well, and research.
Canadian Neurovascular Health Society
The Canadian Neurovascular Health Society is a volunteer-driven non-profit dedicated to serving as a resource for education, research, and support for individuals at risk, families, and their caregivers, government, the public, and medical and research communities.
AXS Map is a public crowd-sourced tool for sharing reviews of wheelchair accessibility in various businesses and places.
The Best Bet Diet Cookbook is a recipe book of dozens of recipes that houses recipes and strategies for those affected by multiple sclerosis.
Assistlist is a platform for the buying, selling, or donating of medical equipment within British Columbia.
This guide outlines what cerebral palsy is, the causes of cerebral palsy, common treatments for cerebral palsy, common myths about cerebral palsy, as well as the different types of cerebral palsy. *Long resource*
Cerebral Palsy Association of BC Brochure
Cerebral Palsy Association of BC brochure which outlines all of the programs and services that they offer at the association.
Cerebral Palsy Association of BC
Cerebral Palsy Association of BC is a non-profit organization dedicated to raising awareness of cerebral palsy in the community, assisting those living with cerebral palsy to reach their maximum potential, and working to see those living with cerebral palsy realize their place as equals in a diverse society.
Living with Cerebral Palsy Manual
Genetic Insights into Cerebral Palsy Article
Genetic insights into the causes and classification of cerebral palsies.
The Cerebral Palsy Guide is an organization dedicated to educating individuals and families about cerebral palsy. This resource is a comprehensive and easy-to-follow introduction for health professional students to learn about cerebral palsy. Some example of pages include information about diagnosis processes, causes, and treatments.
This personal narrative speaks to this individual’s life long interactions with health care professionals and how they have made an impact on their lived experience with dyspraxia.
This slideshow speaks to an individual’s journey with dyspraxia and highlights the internal and external triggers contributing to the stigma around their condition.
This program is intended to assist parents with some of the extraordinary costs of caring for a child with severe disabilities at home. It provides assistance in two main areas: Respite Benefits and Medical Benefits.
Developmental Disabilities Association – Infant Development Program (IDP)
The Infant Development Program (IDP) supports families with infants from birth to 3 years old who are at risk for a developmental delay or have developmental delay(s) or who are diagnosed with a disability/medical condition.
BC Centre for Ability – Supported Child Development Program (SCDP)
The Supported Child Development Program (SCDP) helps families of children with extra support needs to access inclusive child care that meets family needs. This program is intended to serve children from birth to 12, with services for youth 13 -19 years available in some communities.
Aboriginal Supported Child Development
Aboriginal Supported Child Development Program is designed to specifically meet the needs of Aboriginal children with special needs. ASCD recognizes that inclusion and providing early intervention and support in child care settings during the early stages of development is important. ASCD enables children who require extra support to be included in a childcare, preschool or after-school setting when their parents or caregivers are working or going to school.
The OnTrac Program is an excellent resource for children transitioning from pediatric care into adult health care.
Parent Project Muscular Dystrophy
This resource provides information about muscular dystrophy and treatment protocols for professionals.
Muscular Dystrophy Canada is a national, non-profit organization of dedicated volunteers and staff who continually work to provide support and resources to clients who are impacted by 1 of over 150 neuromuscular disorders. Their page includes a number of resources about living with Muscular Dystrophy and how professionals can help.
Parkinson Society British Columbia
The Parkinson Society’s purpose is to ease the burden and find a cure for Parkinson’s disease through advocacy, education, research and support services. It offers support, reliable information and education for people with Parkinson’s, caregivers and healthcare professionals.
CDC Disability and Health Page for Health Care Providers
This resource provides information for health care providers on providing care for individuals with disabilities. It also includes a toolbox of additional resources.
A resource that includes a monthly round up of blog posts written by individuals with disabilities as well as podcasts and informative links to other disability blogs and organizations.
Stella Young: “I’m not your Inspiration, thank you very much”
Stella Young, a comedian and journalist, discusses the stigma and stereotyping around individuals with disabilities in this TED talk (9 minutes long).
An organization that provides peer support groups and additional resources for individuals with spinal cord injuries. Their SCI Info database also provides a comprehensive database of resources for individuals with spinal cord injuries and related physical disabilities, caregivers, and other stakeholders.
An organization providing support, advocacy, and information for individuals with disability across British Columbia.
A non-profit Burnaby-based organization, the Neil Squire Society aims to provide individuals with disabilities with computer assistive technology, employment programs, and education models, to empower them in their workplace.
The Disability Foundation supports programs that inspire people with disabilities through outdoor activities like sailing, hiking and paddling, or through the self-expression that comes from music and gardening, or the independence that comes from custom assistive devices.
The Rick Hansen Foundation is an organization dedicated to improving the lives and inclusivity of individuals with disability by supporting and designing awareness programs, accessibility initiatives, and spinal cord injury research
BC Women’s Hospital – ACCESS Clinic
The ACCESS Clinic offers cervical cancer screening (Pap Tests) to adolescents and women with disabilities, or who have had difficulties with routine screening at their health care provider’s clinic. Referral is available online.
A provincial federation, Inclusion BC provides support, education, and advocacy for families and individuals with developmental disabilities.
Family Support Institute of BC (FSI)
FSI is unique in Canada and is the only grassroots, parent-to-parent support organization for families with children with disabilities. They have a wide volunteer base and is free to any family.
Find Support BC is BC’S first comprehensive and searchable online disability resource database. The database is a central access point for locating programs and activities in the region from assistive technology, recreation, and housing options to funding, financial security, and programs of the Ministry of Children and Family Development (MCFD), and Community Living British Columbia (CLBC), Ministry of Social Development and Social Innovation (MSDSI) and many other supports and services.
BC Association for Child Development and Intervention – Our Stories
This resource includes a number of stories of children battling with the health care system to seek treatment for developmental disabilities in BC.
Individual Funding Resource Centre Society
The Individual Funding Resource Centre Society is a non profit that works with individuals apply for Choice in Supports for Independent Living (CSIL) program, housing, and many other resources.
March of Dimes is a community-based rehabilitation and advocacy charity for people with physical disabilities. This resource includes information about their range of programs and services specific for individuals with disabilities.
*Scroll down to page 15* This report gives a table of words to use to address individuals with disabilities. The goal of this list is to promote the individual rather than the disability.
Speech-Language and Audiology Canada
Speech-Language & Audiology Canada (SAC) is a membership-driven organization that supports, promotes and represents speech-language pathologists, audiologists and communication health assistants inclusively.
Spinal Cord Injury Research Evidence (SCIRE)
SCIRE Professional offers systematic reviews of spinal cord injury research for health care professionals to use to guide their practice based on current and reliable evidence.
SCIRE Community provides research-based information about spinal cord injury written in everyday language to make it accessible and understandable to the larger community.
TheBodyPro: For the HIV/AIDS Workforce
A comprehensive online resource database for HIV/AIDS treatment specifically catered to health care professionals. Includes current news and research around HIV/AIDS as well as clinical management and prevention guidelines (e.g. *Providing Quality HIV Care*).
The Body: The HIV/AIDS Resource
A comprehensive online resource database for HIV/AIDS. Specific resources are targeted towards individuals recently diagnosed with HIV/AIDS and include personal stories and initial treatment plans.
NAM is an informational database for HIV/AIDS, it is aimed at two main audiences: people living with HIV; and professionals working in the field such as doctors, other healthcare workers, community advocates and HIV organization staff and volunteers. They provide current news on HIV/AIDS, basic information about HIV/AIDS diagnosis and treatment, as well as resources for their target population.
CATIE is a Canadian-based organization bridging research and practice. They connect healthcare and community-based service providers with the latest science, and promote good practices for prevention and treatment programs through an online platform.
PAN engages in community-based research (CBR) and program and implementation science to build a body of evidence aimed at improving the health and wellbeing of people living with HIV and HCV.
An informational handout to give a basic understanding of HIV/AIDS.
About GERD is a registered non-profit education and research organization. They provide a comprehensive outline of signs and symptoms along with treatment plans and personal stories.
Living Positively with Dementia
A personal narrative of living positively with dementia. Describes an individuals journey to diagnosis and support for dementia.
A directory that provides information, resources, and tools to help physicians provide early diagnosis and to help all health-care providers support individuals and their families throughout the continuum of the disease.
A directory of clinical resources for health care professionals working with patients with Alzheimer’s.
The BC Hepatitis Network is a non-profit community-based organization working with community and stakeholders to inform, support, and strengthen their response to hep C in BC AND to support access to care, treatment and support for people living with hepatitis.
Hepatitis Education Canada develops culturally and linguistically sensitive hepatitis C education resources for the population, hepatitis patients and health care providers. Resources cover topics such as prevention, testing, care and support, treatment and living with hepatitis.
Facebook Group – Lower Mainland Transplant Support Group of BC (Liver)
Link to the Lower Mainland liver transplant support group of British Columbia. The articles are almost all written and circulated to the group by Coastal Health and the Solid Organ Transplant Group.
Pathways Serious Mental Illness Society
PSMIS supports the families of loved ones living with a serious mental illness through a peer support model in their programming and services.
BC Mental Health and Substance Use Services (BCMHSUS)
BCMHSUS provides health care services to people across British Columbia with complex needs, including severe and persistent mental health and substance use issues. This website provides excellent resources for health professionals to learn about referrals to their programs and explore evidence-based resources on the latest in mental health and substance use care, including trauma-informed practice, opioid agonist treatment and more.
Here to Help offers quality information on mental health, mental illness and substance use, connecting people to key resources in BC. Their variety of resources cover personal support and support for others.
Pain BC offers information, resources and support for people living with chronic pain. They also offer evidence-based education programs for health care professionals to increase their chronic pain capacity and improve the health outcomes of people living with chronic pain.
Patient and Healthcare Practitioner Resources
Emotional Intelligence in Health Care Settings
This article speaks to the role of emotional intelligence in health care settings, both from the practitioner and patient’s view.
Describes the 12 social determinants of health.
This blog post describes what it is like to live with chronic illness, particularly an undiagnosed one, and allows the reader to gain a new perspective on living with a chronic disease.
BC Housing develops, manages, and administers a wide range of subsidized housing options across BC, and is a resource for housing assistance (e.g. rental housing, financial assistance, tenant resources).
This online repository of documents provides practitioners and patients reputable, evidence-informed health education documents about an array of conditions/disabilities in accessible language.
This article touches on the topic of building one’s care team and emphasizes the importance of caregivers.
BC 211 connects people to social, government, and community resources within their region. Their resource database lists over 15,000 community and government programs and services which include basic needs like food and shelter, mental health and addictions support, support for seniors, and more.
HealthLink BC provides reliable non-emergency health information on more than 5,000 health topics. Information and advice is available online, by telephone, and mobile app. It also includes interactive health tools and tips to help maintain a healthy lifestyle.