Directory of Government, Community and Other Resources
Disclaimer
This document directs you to external websites. However, we have no control over the content of these sites and cannot guarantee the accuracy of the information presented.
- Regroupement québécois des maladies orphelines
- Canadian Organization for Rare Disorders (CORD)
- Rare Disease Foundation (Canada)
- Alliance Maladies Rares (France)
- Orphanet (International portal for rare diseases and orphan drugs)
- National Organization for Rare Disorders (NORD) (United States)
- Genetic Alliance
- Global Genes
- Rare Disease UK (United Kingdom)
- EURORDIS (Europe)
- Rare Diseases International
Ministry of Health and Social Services (MSSS – Québec)
- Directory of health and social services resources (community organizations)
- Info-santé 811: health advice; psychosocial advice (distress situations); one-stop access to a doctor
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Find out which clinics offer same-day or next-day medical consultations
- Carnet santé Québec
- Office des personnes handicapées du Québec
- Régie de l’assurance maladie du Québec
- Family and personal support
- User rights and complaint procedures
- An Act respecting end-of-life care
- Medical aid in dying
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Institut national d’excellence en santé et en services sociaux (drug and health technology assessment)
- Institut national de santé publique du Québec
Health Canada
- Drugs and health products (see also our Drug resources page – RQMO )
- Benefits and tax credits for disabled children and adults
- Employment insurance: sickness benefit; caregiver leave benefit
- Disability rights – Canada.ca
- Your health rights
- Council for the protection of patients
- User rights and complaint procedures
- Centers d’assistance et d’accompagnement aux plaintes (CAAP)
- An Act to ensure the exercise of the rights of persons with disabilities – Office des personnes handicapées du Québec (gouv.qc.ca)– School, work and society
- Confidentiality and medical records
- You can request a copy of or extracts from your or your child’s medical record from an institution’s medical records department using this standard MSSS form. You can make this request to obtain the information yourself, or to pass it on to a healthcare professional. Please note that from the age of 14, a teenager must sign this form to consent to the release of the information in his or her file.
Office des personnes handicapées du Québec
Associations and support for people with physical or intellectual disabilities
- Directory of support organizations: Home | L’accompagnateur (laccompagnateur.org)
- Information on rare diseases: Regroupement québécois des maladies orphelines and its iRARE Center
- Facebook group: Maladies rares / orphelines – Soutien et références – Québec
- Quebec Association for Social Integration (AQIS)
- West Island Association for the Intellectually Handicapped (WIAIH) (Serving people with an intellectual disability or autism; West Island of Montreal, bilingual services)
- ExAequo: defending the rights of people with motor disabilities.
- Fédération des Mouvements Personne d’Abord du Québec
- Solidarity of parents of disabled people
- Alliance québécoise des regroupements régionaux pour l’intégration des personnes handicapées (AQRIPH)
- Coalition of Parents of Special Needs Children of Quebec (CBEBPQ)
- Montreal Association for the Intellectually Handicapped (AMDI)
- Parents for the Intellectually Handicapped (PARDI)
- DéPhy Montréal (Association of physical disability organizations on the island of Montreal)
- Vivre Grand (formerly the Association pour l’intégration sociale de la région de Québec – AISQ)
- Handi-capable (Sherbrooke)
- Handicap Soleil (Mauricie)
- Regroupement des organismes de promotion de personnes handicapées de Laval
- Episodic Disabilities Network (EDN)
Miscellaneous services
- Canada’s march of dimes: adapted devices, accessories and technologies; home and vehicle adaptation; employment assistance; auxiliary services, etc.
- Fondation papillon: adult day-care center; day and vacation camps; day-care center, etc.
- Friendship Circle
- Disabled parking sticker (SAAQ)
- Regroupement des Usagers du Transport Adapté et accessible de l’île de Montréal (Association of Users of Adapted and Accessible Transport on the Island of Montreal)
- OnRoule.org – Everyday accessibility (accessibility of places and businesses; Info-Logement-Interactif Accessible)
- AQLPH | Quebec Association for the Leisure of Disabled People
- Kéroul: tourism and culture for people with restricted physical ability
- Mira Foundation – companion dogs
- Carte accompagnement loisir (CAL) : grants free access to the companion of a person aged 5 or over with a disability to take part in a leisure, cultural or tourist activity.
- Access2 Card (Access to Entertainment for 2 Program): Administered by Easter Seals Canada. Provides free or discounted admission to the companion of a person with a permanent disability when visiting participating entertainment venues.
- Carte québécoise à l’accompagnement : Administered by the Fédération des transporteurs par autobus. Gives free access to the companion of a person at least 8 years old with a permanent disability on a bus trip.
- Togo dogs – psychological support
- Arounda mobile application for the blind
- Les Amputés de guerre (financial aid for the purchase of artificial limbs, support for amputees)
- Family support guide (Office des personnes handicapées)
- The companion: a directory of resources
- See also “Resources for people with disabilities” tab
Other services
- Œuvre des Manoirs Ronald McDonald de Montréal: temporary residence for parents from remote areas who have a sick child in need of care at a Montreal children’s hospital.
- Manoir Ronald McDonald de Québec : temporary residence for parents from remote areas who have a sick child in need of pediatric care in a Quebec City-area hospital.
- Plasters: to help children feel less fear and pain during treatment and in hospital
- Skip – Solutions for children’s pain
Books/documents/forums
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- Éditions du CHU Sainte-Justine
- Children with chronic illnesses or complex care needs
- Montreal Children’s Hospital Family Library
- Sainte-Justine UHC Library: Info-Family Guide
- AboutKidsHealth: Children’s health information, Sick Kids Toronto
- Canadian Paediatric Society – Position statements and practice points
- Knitting with love – Study on family life with a disabled child (Conseil de la famille et de l’enfance – Québec)
- Enfant-différent – Parenting a different kind of child: blogs, websites and parent testimonials
- MSSS directory
- 211 Greater Montreal – Gatineau
- 211 Québec and regions
- Reference Center of Greater Montreal Information on social and community resources in Greater Montreal.
- HealthIndex.ca
- Find a community foundation
Ordre professionnel des diététistes du Québec
Ordre des ergothérapeutes du Québec
Ordre des infirmières et infirmiers du Québec
Ordre des infirmières et infirmiers auxiliaires du Québec
Ordre professionnel des inhalothérapeutes du Québec
Collège des médecins du Québec
Ordre des optométristes du Québec
Ordre des orthophonistes et audiologistes du Québec
Order of Pharmacists of Quebec
Ordre professionnel de la physiothérapie du Québec
Ordre des psychoéducateurs et psychoéducatrices du Québec
- Critical illness – Find out, understand, act
- Episodic Disabilities Network (EDN)
- Quebec Association for Chronic Pain
- SKIP, Solutions for children’s pain
- Quebec Chronic Pain Association
Books
- ” Y a de la visitea children’s story to tame a parent’s chronic pain.
- Pain, from suffering to well-being
- Overcoming pain through diet
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Canal M, the Vues et Voix radio station Canal M: this radio station presents service magazines, programs on disability news, new audio books, and exchanges between players in the field.
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AMI Télé: three services, AMI-télé in French and AMI-tv and AMI audio in English
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Service québécois du livre adapté: Braille books, audio books, films with video description.
- Le Phare Enfants et Familles
- Center de répit Philou
- L’Étoile de Pacho – Support network for parents of disabled children
- Angelman respite center
- Center Petite Échelle
- The Gioia children
- Buds in Radiance
- SOS Garde A site to find a babysitter or someone to help people with special needs near you.
- Find a summer camp for children with special needs
Quebec Government
- Tax measures and annuities
- Supplement for disabled children and supplement for disabled children requiring exceptional care
- Disability status (Régie des rentes du Québec)
- Financial assistance for studies
Government of Canada
- Benefits and tax credits for disabled children and adults
- Employment insurance:sickness benefit; caregiver leave benefit
- Registered Disability Savings Plan (RDSP)
Other resources
- Federal school scholarships
- Provincial scholarships
- Quebec Association for Post-Secondary Equity and Inclusion (AQEIPS)
- Provincial scholarships
- Finautonome
- Société d’aide financière aux personnes handicapées
- Coopassist: helping disabled people live independently
- Alisa refunds
Foundations providing financial assistance to children and families
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- Government of Quebec – Support for students with handicaps, social maladjustments or learning disabilities
- Quebec Association for Post-Secondary Equity and Inclusion (AQEIPS)
- College support services
- Fédération des comités de parents du Québec
- A guide for parents of children with special needs
- Guide d’accompagnement pour les parents : The intervention plan
- Social integration of children in daycare (ISEMG)
- National Student Protector
- The rights of students with special needs (CDPDJ)
- ROSEPH Regroupement des organismes spécialisés pour l’emploi des personnes handicapées (Group of specialized organizations for the employment of disabled people)
- Living better with your child from pregnancy to age two (INSPQ)
- Quebec prenatal screening program for trisomy 21
- Obstetrical ultrasound
- Amniocentesis
- Chorionic biopsy and prenatal diagnosis
- Préma-Québec – The Quebec Association for Premature Children
- Quebec Infertility Association
- Self-help and support center for people living with reproductive issues (ESPER)
- Quebec assisted reproduction program
- Genetic Counselling: For Canadians Seeking Assisted Reproductive Technologies
- Umbilical cord blood donation
- Association Emmanuel: adoption of disabled children.
- See “Bereavement” section for bereavement of a child during pregnancy
Genetics information
RQMO iRARE Centre (a genetic counsellor can help you or refer you to a genetics service)
- Genetic testing for medical purposes
- Génome Québec
- Understanding genomics
- Quebec’s founding effect
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- Quebec Science Podcast
- CORAMH – Hereditary diseases of the Saguenay-Lac-St-Jean region
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- Lexigène: French-English genetic counseling glossary
Screening
- Québec prenatal screening program
- Blood screening for newborns
- Carrier testing for autosomal recessive inherited disorders for people from the Saguenay-Lac-Saint-Jean, Charlevoix and Haute-Côte-Nord regions
- Jewish Genetic Disorders & Screening
- Association d’Anémie Falciforme du Québec: forinformation on screening for sickle cell anemia before pregnancy
- Information on diseases detected in newborns
Discrimination and equity
- Genetic Non-Discrimination Act (Canada)
Genetic counseling
- What is a genetic counselor?
- Quebec Association of Genetic Counsellors (QAGC)
- Canadian Association of Genetic Counsellors (CAGC)
- Personal Decision Aid (Ottawa) from the Ottawa Hospital Research Institute: guides to help make decisions about health or social services.
Practice guidelines, policies and reports on medical genetics
Quebec Genetics Services
Montréal
- McGill University Health Centre (MUHC)
- Medical genetics, pediatrics and adults: (514) 412-4427
- Prenatal diagnosis program: (514) 412-4432
- Hereditary cancers: (514) 934-1934 ext. 44067
- CHU Sainte-Justine
- Medical genetics, pediatrics, adult, prenatal: (514) 345-4727
- Center hospitalier universitaire de Montréal (CHUM)
- General adult genetics and hereditary cancers: (514) 890-8104
- Jewish General Hospital
- Prenatal diagnosis service: (514) 340-8222 ext. 3428
- Hereditary cancers: (514) 340-8222 ext. 3965
- Rivière-des-Prairies Hospital
- Neurodevelopmental disorders, intellectual disability, autism, etc. : (514) 323-7260 poste 2637
- Montreal Heart Institute
- Adult genetics and cardiology (514) 376-3330 ext. 352
- Center de Génétique Cardiovasculaire, (514) 376-3330 ext. 2498
- Charles Lemoyne Hospital
- Hereditary cancers: (450) 466-5000
Quebec
- CHUQ-CHUL – Department of Genetic Medicine: (418) 577-4696
Sherbrooke
- CHUS – Medical Genetics Department: (819) 564-6828
Saguenay
- CSSS de Saguenay Genetics department: (418) 541-1234 ext. 3238
- To help people suffering from rare diseases, give “a part of you”:
- Héma-Québec: blood donation, plasma donation, stem cell donation (bone marrow), tissue donation, umbilical cord blood donation, breast milk donation.
- RAMQ: organ donation (sign your card, but also register with the “Registre des consentements au don d’organes et de tissus”).
- Transplant Québec
- Body donation (for teaching and research, MSSS, Quebec)
- Organ Donation Association of Canada
- Association québécoise de soins palliatifs: find a hospice
- Expressing my care directives in the event of incapacity
- Levels of care when seriously ill
- Medical aid in dying
- Le Phare, Children and Families
- Canadian Hospice Palliative Care Association
- PalliAmi Foundation
- Palli-Aide – Palliative care support (Saguenay)
- Fédération du Mouvement Albatros du Québec (FMAQ)
Resources for parents who have lost a child
Perinatal bereavement (for parents who have lost a baby during pregnancy or had a medical abortion)
- Orphan parents
- Our little ones
- Les rêves envolés: travers le deuil d’un tout petit bébéwritten by Suzy Fréchette Piperni, B.Sc., nurse specialized in perinatal bereavement.
- Quebec Physician Directory
- Federation of Medical Specialists
- Quebec Food Allergy Association
- MedicAlert
- Lab Tests Online Lab Tests Online: information on medical biology tests carried out by laboratory professionals.
- Vaccines411Vaccination information for children and adults
- Personal Decision Aid (Ottawa) from the Ottawa Hospital Research Institute: guides to help make decisions about health or social services