Your Voice

To take the Your Voice caregiver survey, a person needs to be a B.C. resident and a caregiver to someone diagnosed with the medical condition(s) or circumstance (the "indication") for the drug under review. The caregiver may be a:

• Family member (e.g., child, parent, niece, nephew)
• Person hired to provide care in the patient’s home (e.g., homecare worker, practical nurse)
• Person hired to provide individualized, supplementary care to a person in a hospital or care facility (e.g., hospice, long-term care facility)*
• Volunteer who provides ongoing care to a patient at home or in a hospital or care facility (e.g., a volunteer hospice worker)

*Nurses who care for groups of patients in a hospital are not considered caregivers for this survey. Nurses hired to provide care to individual patients, however, are considered caregivers and can complete a caregiver survey.

To take the Your Voice patient group survey, a patient group must:

• Represent B.C. residents diagnosed with the medical condition(s) or circumstance (the “indication”) for the drug under review, and
• Be registered with the BC Ministry of Health, and
• Be a not-for-profit group whose primary purpose is to advocate for the patients it represents.

If you are not sure whether your group qualifies, send an email to pim@gov.bc.ca. Not registered yet? Use our registration form.

Registered patient groups

A

AboutFace CranioFacial Family Society: People living with facial differences  – including congenital birth defects, such as cleft lip and palate, hemangioma or apert, or acquired facial disfigurements, such as from burn, cancer or accident – and their families

aHUS Canada/SHUa Canada: Patients living with atypical hemolytic uremic syndrome and their caregivers and families

Alliance for Equality of Blind Canadians: Blind, deafblind and partially sighted Canadians

ALS Action Canada: ALS patients and supporters in B.C. and across Canada

Alzheimer Society of BC: People living with Alzheimer’s disease and other related dementias and their families

Amyotrophic Lateral Sclerosis (ALS) Society of British Columbia: People living with and affected by ALS in B.C.

Answering T.T.P. (thrombotic thrombocytopenic purpura) Foundation: TTP patients and supporters

Aplastic Anemia and Myelodysplasia Association of Canada: Persons with aplastic anemia, myelodysplasia and paroxysmal nocturnal hemoglobinuria (PNH)

Arthritis Consumer Experts: People living with arthritis

The Arthritis Society, BC & Yukon Division: People of all ages living with arthritis

ASIC (Access for Sight Impaired Consumers): Blind and partially-sighted people in B.C.

Asthma Canada: Patients with asthma and associated allergies across Canada

B

BC Association of Pregnancy Outreach Programs: Pregnancy outreach programs supporting marginalized and vulnerable women who are pregnant, post-partum or transitioning into parenting

BC Epilepsy Society: People affected by epilepsy

BC Alliance for Healthy Living Society: Those with chronic disease and at risk of chronic disease

BC Hepatitis Network: People living with and at risk for viral hepatitis infection 

BC Lung Association: Patients suffering from lung disease

BC Lupus Society: B.C. residents who have lupus, and their personal networks, including families, caregivers and friends

BC Lymphedema Association: Lymphedema and lipedema patients

BC Schizophrenia Society: People affected by schizophrenia and psychosis

C

Canadian Alopecia Areata Foundation (CANAAF): Children, teens and adults living with alopecia areata and their supportive others 

Canadian Arthritis Patient Alliance: Patients with all forms of arthritis

Canadian Association for Safe Supply: Increasing access and supply to legal, regulated substances of known potency

Canadian Association of People Who Use Drugs (CAPUD): People at risk of overdose, people living with opioid use disorder

Canadian Association of PNH Patients: PNH patients and caregivers

Canadian Breast Cancer Network (CBCN): Canadians affected by breast cancer, including patients, survivors, caregivers and family members

Canadian Cancer Society, BC and Yukon: Cancer patients and their families, in communities across B.C. and the Yukon, trying to prevent cancer and enhance the quality of life of those living with cancer

Canadian Cancer Survivor Network: Cancer patients, survivors, caregivers, family members and other cancer organizations

The Canadian Continence Foundation: Urinary and fecal incontinent patients

Canadian Council of the Blind: Blind and vision-impaired Canadians

Canadian Digestive Health Foundation: Canadians who suffer from digestive disorders of all kinds, the entire spectrum, from constipation to inflammatory bowel disease

Canadian FOP Network: The Canadian FOP Network provides support and education to children and adults living with FOP, raises funds for research, and advocates for access to treatment for patients with FOP

Canadian Hemophilia Society: Canadians with inherited bleeding disorders

Canadian Liver Foundation: Public and patients living with or at risk of liver disease

Canadian MPN Network: Canadians who are diagnosed with myeloproliferative neoplasms

Canadian Neuroendocrine Tumour Society (CNETS): NeuroEndocrine Tumour (NET) cancer patients

Canadian Organization for Rare Disorders: Patients, caregivers, and patient groups affected by rare disorders

Canadian Patient Coalition: Charities and NGOs who represent patients

Canadian PBC Society: PBC patients, caregivers and families

Canadian Pituitary Patient Network: Patients with endocrine disorders

Canadian PKU & Allied Disorders Inc: Families across Canada that have PKU or other rare disorders

Canadian Pulmonary Fibrosis Foundation: Pulmonary fibrosis patients

Canadian Skin Patient Alliance: Canadian skin patients

The Canadian Society for Mucopolysaccharide & Related Diseases Inc: Individuals and families affected by MPS and related diseases

Canadian Spondylitis Association: All Canadians living with ankylosing spondylitis, psoriatic arthritis, enteropathic arthritis, undifferentiated arthritis, axial spondylitis and juvenile spondylitis

Canadian Treatment Action Council: People living with HIV and co-infected

The Center for Epilepsy and Seizure Education in BC: People affected by epilepsy

Centre for ADHD Awareness, Canada (CADDAC): Those affected by ADHD

CF Get Loud: Cystic fibrosis patients and families

The Chronic Pain Association of Canada: Members in B.C. who suffer pain

Clean Air Coalition of BC: The member organizations represent the interests of persons in B.C. who are affected by heart (cardiac) and/or lung-related health issues

CLL Canada: CLL patients and caregivers nationally and internationally

CNIB (Canadian National Institute for the Blind): Blind and partially-sighted B.C. residents

Comox Valley People in Pain Network Support Group: People living with persistent pain

Consumer Advocare Network: A national network of healthcare consumers organizations and individuals

COPD Canada: Canadians with COPD (chronic obstructive pulmonary disease)

COPD Canada Patient Network: Patients in Canada with COPD

Crohn's and Colitis Canada: People affected by Crohn's disease and ulcerative colitis, two main forms of inflammatory bowel disease (IBD)

Cure SMA Canada: Spinal muscular atrophy patients and caregivers

Cystic Fibrosis Canada: Individuals with cystic fibrosis, their families and caregivers

D

Diabetes Canada:  People living with diabetes

E

East Vancouver People in Pain Network Support Group: People living with persistent pain

Eczema Society of Canada: Eczema patients and caregivers

F

FH Canada Patient Network: Patients with familial hypercholesterolemia (FH)

Fighting Blindness Canada: Canadians living with vision loss and blindness

G

Gastrointestinal Society: Persons with gastrointestinal and liver diseases and disorders

H

HAE Canada: Hereditary angioedema (HAE) patients

Heart and Stroke Foundation: People afflicted by heart disease and stroke (primary & secondary prevention and treatment)

HeartLife Foundation: Heart failure patients in Canada

Hep C Awareness: Those living with hepatitis C, and their family/friends/caregivers

I

Inflammatory Breast Cancer Network Foundation Canada: Inflammatory Breast Cancer patients and their family members or support people

International Federation on Ageing: Older people

The Isaac Foundation: Canadian patients affected by rare diseases, including MPS, LAL-D, HPP, Batten Disease, and more

K

Kelowna People in Pain Network Support Group: People living with persistent pain

Kidney Foundation of Canada, BC Branch: 7,000 B.C members and volunteers, and B.C. residents affected by chronic kidney disease

L

Leukemia and Lymphoma Society of Canada: Blood cancer patients

LHON Canada: Patients with Leber hereditary optic neuropathy

Lupus Canada: People living with lupus and their caregivers, family and friends

Lutheran Senior Citizens' Housing Society: Seniors requiring long-term care in B.C.

Lymphoma Canada: Patients and families affected by lymphoma

Lynn Valley Chronic Pain Support Group: People living with persistent pain

M

Medicines Access Coalition - BC (MedAccessBC): Patients represented by our member organizations

Mental Health Recovery Partners - South Island: People with schizophrenia, early psychosis, mood disorders

Mental Health Recovery Partners Society - Central Vancouver Island: Friends and family of those living with a mental illness

Metis Epilepsy Society: Advocating for all people suffering with epilepsy when the BC Epilepsy Society may not have the capacity to handle advocacy requests. Their focus is on Indigenous epilepsy advocacy. 

Migraine Canada: People living with migraines

Mood Disorders Association of British Columbia: Those with mood disorders and other mental illnesses

Multiple Sclerosis Society of Canada, BC & Yukon Division: People with MS, their caregivers, family members and the medical community who work with them

MS Society of Canada, Central Island Chapter:  People with MS, their caregivers, family members and the medical community who work with them

MS Society of Canada, South Okanagan/Similkameen Chapter: People with MS, their caregivers, family members and the medical community who work with them

MS Society of Canada, South Vancouver Island Chapter: People with MS, their caregivers, family members and the medical community who work with them

MS Society of Canada, West Kootenay Chapter: People with MS, their caregivers, family members and the medical community who work with them

Muscular Dystrophy Canada: Canadians affected by neuromuscular disorders

Myalgic Encephalomyelitis | Fibromyalgia Society of BC: People living in B.C with Myalgic Encephalomyelitis (ME) (87,000), Long-COVID over 1 year (118,000), and Fibromyalgia (FM) (136,000)

Myeloma Canada: Patients living with multiple myeloma

N

National Gaucher Foundation of Canada: Canadian Gaucher patients

North Shore Chronic Pain Support Group, under Chronic Pain Association of Canada: People living with pain

O

Osteoporosis Canada: People living with or at risk of osteoporosis

Obesity Canada: Canadians living with obesity; health professionals and academics with a focus in obesity treatment, prevention and management

P

PAN (Pacific AIDS Network Society): Community-based organizations addressing HIV, hepatitis C and promoting access to harm reduction 

Pacific Hepatitis C Network: People living with Hepatitis C

Pain BC: People living with chronic pain

Parkinson Canada: People living with Parkinson's and caregivers/families

Parkinson Society British Columbia: People living with Parkinson's and caregivers/families

Parkinson Wellness Projects: People with Parkinson's disease and epilepsy

Patient Commando: Independent group amplifying the patient voice for any health condition

Patients Voices Network: Impact BC

Pediatric Cancers Survivors Society of BC: Adult survivors of pediatric cancer

People in Pain Network: People living with persistent pain

Polycystic Kidney Disease (PKD) Foundation of Canada: Patients and their support systems

Positive Living Fraser Valley: People living with HIV/AIDS and Hepatitis C

Positive Living Society of British Columbia: HIV-positive people

Prostate Cancer Support Group Chilliwack: Prostate cancer patients

Psoriasis Canada: People who live with psoriatic disease. Psoriasis Canada is a recent consolidation of the Canadian Psoriasis Network and the Canadian Association of Psoriasis Patients

Pulmonary Hypertension Association of Canada: Canadians affected by pulmonary hypertension

Q

QuitNow: Tobacco users trying to quit

R

Reaching Out MS Society of Salmon Arm: People with MS

Rett Syndrome Society of BC: Those diagnosed with Rett Syndrome and their families/caregivers

S

Save Your Skin Foundation: Patients and caregivers

Schizophrenia Society of Canada: People living with schizophrenia, schizo-affective disorder, early psychosis and their family members

Scleroderma Association of BC: Scleroderma patients in B.C.

Scleroderma Society of Canada: Scleroderma patients and their families throughout Canada

Sjogren’s Society of Canada: People with Sjogren’s syndrome and those seeking diagnosis

Soft Bones Canada: All Patients, caregivers and their families across Canada who are affected by the rare metabolic bone disease hypophosphatasia (HPP)

Steveston Chronic Pain Support Group: People living with persistent pain

Stroke Recovery Association of BC: Stroke survivors in the community

The Sumaira Foundation: Patients with neuromyelitis optica spectrum disorder (NMOSD), myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD), and other rare neuroimmune conditions

T

Thalassemia Foundation of Canada: Thalassemia patients and families

Thyroid Cancer Canada: Canadians that have been affected by thyroid cancer

Thyroid Foundation of Canada: Thyroid patients across Canada

Trigeminal Neuralgia Association of Canada: People who suffer with trigeminal neuralgia

Tuberous Sclerosis Canada Sclérose Tubéreuse: Support and advocacy for individuals and families living with tuberous sclerosis complex

Tumour Foundation of BC: Patients with neurofibromatosis and their families

Type 1 Together: Type 1 diabetes

V

Vasculitis Foundation Canada: All vasculitis patients in Canada 

Vancouver Acromegaly Support Group: Acromegaly

Vancouver Island Multiple Myeloma Support Group: Myeloma patients

Victoria Chronic Pain Support group: People living with persistent pain

W

Why Choice Matters: People with mental illnesses and family members

Williams Lake People in Pain Network Support Group: People living with persistent pain

Women's Health Initiative Network: Women with uterine health conditions including fibroids, contraceptive care, bladder and vaginal health concerns

Survey responses are stored in a secure government location. Personal identifiers are removed by authorized employees before the Drug Benefit Council reviews your answers. Patients and caregivers don’t need to give their name or address to complete a survey. Patient groups must provide a contact name and the address of their main office.