Rare Disease Resources

http://www.mefm.bc.ca/me-info

Myalgic Encephalomyelitis- description of condition, symptoms, and treatment

http://mefmaction.com/images/stories/Medical/ReviewofME-CFS_diagnososandmanagement.pdf
Comprehensive article on ME. Talks about diagnosing ME/CFS and about its etiology, pathophysiology, management approach, long-term prognosis and economic cost.

http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full
Journal article on Myalgic Encephalomyelitis.

http://www.bcwomens.ca/our-services/specialized-services/complex-chronic-disease-program
BC Women’s Complex Chronic Disease Program. A groundbreaking program with a two-year waiting list.

http://www.cfidsselfhelp.org/
Non-profit foundation dedicated to bridge the gap in rare disease research and family and patient support.

https://www.rarediseasefoundation.org/

*Family and Patient Support* Non-profit foundation dedicated to bridge 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.

https://guthyjacksonfoundation.org

Research for the rare disease, Neuromyelitis optica-NMO. Includes general information about NMO and resources.

http://www.nmodiaries.com/what-is-nmo-1/

Blog written by 3 women who live with NMO. By sharing their stories, they hope to inspire others with medical challenges to live life to the fullest.


Resources by Condition/Disability

http://www.arthritisresearch.ca

Provides access to arthritis specific research and opportunities to participate in research

https://www.arthritis.ca/healthcare-professionals/healthcare-professionals-home

The Arthritis Society is committed to educating healthcare professionals in the most up-to-date arthritis identification, care and management best practices.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.

https://www.arthritis.org/living-with-arthritis/tools-resources/

*Living with Arthritis* Provides a range of information for patients with arthritis looking for tools and support with their journey with arthritis.

http://mssociety.ca

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.

https://mssociety.ca/support-services/ms-knowledge-network

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.

https://mssociety.ca/support-services/programs-and-services/200/equipment-provision-program-bc-yukon

Equipment Provision Program: sector within the MS Society assist by providing equipment or financial assistance to acquire a new piece of equipment or pay for repairs on current equipment (based on financial need).

https://mslistening.ca/

Results from the MS Society of Canada’s project about listening to people with MS – indicates the key barriers and challenges patients with MS face. Infographic is a good visual representation of results.

http://bccerebralpalsy.com/wp-content/uploads/2014/03/a-guide-to-cerebral-palsy.original.pdf

“Guide to Cerebral Palsy”. 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*

http://bccerebralpalsy.com/wp-content/uploads/2014/03/CPABC-Brochure-2015.pdf

Cerebral Palsy Association of BC brochure which outlines all our programs and services that they offer at the association.

https://www.bccerebralpalsy.com/about-us/

Cerebral Palsy Association of BC base non-profit organization aiming to raise awareness of cerebral palsy in the community, to assist those living with cerebral palsy to reach their maximum potential, and work to see those living with cerebral palsy realize their place as equals in a diverse society.

Living with CP manual

*pg 27 Parental Testimonials* This book again outlines what cerebral palsy is and focuses more on what it is like to live with cerebral palsy and how it may change through different periods in the life span. It also has a list of resources that may be helpful.

 

Genetic Insights into Cerebral Palsy Article

Genetic insights into the causes and classification of cerebral palsies.

Over my lifetime

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.

My Journey

Describes an individual’s journey with dyspraxia highlighting the internal and external triggers contributing to the stigma around their condition.

https://www2.gov.bc.ca/gov/content/health/managing-your-health/healthy-women-children/child-behaviour-development/special-needs/complex-health-needs/at-home-program

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.

https://www.develop.bc.ca/programs/infant-development

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

http://bc-cfa.org/programs-services/supported-child-development/supported-child/development

The Supported Child Development Program (SCDP) helps families of children with extra support needs to access inclusive child care that meets family needs.  The program is intended to serve children from birth to 12, with services for youth 13 -19 years available in some communities.

http://ascdp.bc.ca

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.

http://www.bcchildrens.ca/our-services/support-services/transition-to-adult-care#About

BC Children’s OnTrac Program – an excellent resource for children transitioning into adult health care

http://www.parentprojectmd.org/site/PageServer?pagename=Care_professionals#pt

General information about muscular dystrophy and treatment protocols for professionals.

https://www.muscle.ca

Muscular Dystrophy Canada is a national, non-profit organization of dedicated volunteers and staff who continually work to provide support and resources to clients like you 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.

http://parkinsons.bc.ca

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.

https://www.cdc.gov/ncbddd/disabilityandhealth/hcp.html

CDC Disability and Health Page for Health Care Providers. Also includes a toolbox of additional resources.

http://www.amchp.org/programsandtopics/womens-health/Focus%20Areas/WomensHealthDisability/Pages/CliniciansandWomenInteractions.aspx

Association of Maternal and Child Health Programs: Toolbox for health care professionals-Tools to Empower Clinicians and Women with Disabilities to Interact Effectively

http://www.amchp.org/programsandtopics/womens-health/Focus%20Areas/WomensHealthDisability/Pages/RecommendedServices.aspx

Association of Maternal and Child Health Programs: Toolbox for health care professionals-Tools Increase Knowledge and Use of Recommended Services

http://disabilitythinking.com/

 Disability Thinking – 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.

https://ted.com/talks/stella_young_i_m_not_your_inspiration_thank_you_very_much

TED talk by Stella Young (9 minutes long): I’m not your Inspiration, Thank You Very Much-Young, a comedian and journalist, discusses the stigma and stereotyping around individuals with disabilities

https://sci-bc-ca/resource-centre

Spinal Cord Injury BC -Organization that provides peer support groups and additional resources for individuals with spinal cord injuries.

http://disabilityalliancebc.org/

Disability Alliance of BC: organization providing support, advocacy, and information for individuals with disability across British Columbia.

http://www.neilsquire.ca/about

Neil Squire Society: Non-profit Burnaby based organization that aims to provide individuals with disabilities with computer assistive technology, employment programs, and education models, to empower them in their workplace.

http://disabilityfoundation.org/index.html

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.

http://www.rickhansen.com/

Rick Hansen Foundation: 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

http://www.bcwomens.ca/health-professionals/refer-a-patient/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.

http://www.inclusiosnbc.org

A provincial federation that provides support, education, and advocacy for families and individuals with developmental disabilities.

https://familysupportbc.com/resources/

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 are free to any family.

 

https://findsupportbcc.com/

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.

http://www.bcacdi.org/our-stories

Includes a number of stories of children battling with the health care system to seek treatment for developmental disabilities in BC.

http://ifrcsociety.org

Individual Funding Resource Centre Society – a non profit that works with individuals apply for Choice in Supports for Independent Living (CSIL) program, housing and many other resources.

https://www.marchofdimes.ca/EN/Pages/default.aspx

*Programs and Services Tab* March of Dimes is a community-based rehabilitation and advocacy charity for people with physical disabilities. They have a range of programs and services specific for individuals with disabilities.

A Way With Words and Images

*Scroll down to page 15* 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.

http://www.thebodypro.com/index.html?ic=3003

*HIV Care Today* provides current HIV clinical care guidleines. An online resource for HIV/AIDS treatment specifically for health care professionals. Includes current news and research around HIV/AIDS as well as clinical management and prevention guidelines.

http://www.thebody.com/index.html?ic=3001

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.

http://www.aidsmap.com/

*Topics* 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 organisation 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.

http://www.catie.ca/en/about

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.

https://positivelivingbc.org

Positive Living BC is dedicated to empowering persons living with HIV/AIDS through mutual support and collective action. They provide specific services and resource guidelines for specific populations diagnosed with HIV/AIDS.

https://pacificaidsnetwork.org

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.

HIV 101 information handout 2017

Informational handout to give a basic understanding of HIV/AIDS.

https://aboutgerd.org/

*Living with GERD* A registered nonprofit education and research organization. The provide a comprehensive outline of signs and symptoms along with treatment plans and personal stories.

Living_Positively_With_Dementia_ 2002 (1)

Personal narrative of living positively with dementia. Describes an individuals journey to diagnosis and support for dementia.

http://alzheimer.ca/en/Home/We-can-help/Resources/For-health-care-professionals

Includes information and resources to help physicians provide early diagnosis and to help all health-care providers support individuals and their families throughout the continuum of the disease.

https://www.alz.org/health-care-professionals/clinical-guidelines-information-tools.asp

Clinical resources for health care professionals working with patients with alzheimers.

http://www.pacifichepc.org

The Pacific Hepatitis C Network (PHCN) 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.

http://hepatitiseducation.med.ubc.ca/resources/

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.

https://www.facebook.com/groups/311699175404/?ref=group_header

Link to the lower mainland transplant support group (liver) of British Columbia. The articles are almost all written and circulated to the group by Coastal Health and the Solid Organ Transplant Group. 


Healthcare Practitioner Resources

https://www.linkedin.com/pulse/emotional-intelligence-health-care-settings-daniel-goleman

Speaks to the role of emotional intelligence in health care settings – both from a practioner and patient’s view.

Determinants of Health

Describes the 12 social determinants of health.

https://findingmymiracle.com/2017/10/05/undiagnosed-chronic-illness-fire/

Describes what it’s 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.

https://bchousing.org/home

BC Housing assistance resource.

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