Rare diseases: resources and referrals

Resources for caring for someone with a rare disease

Make your daily life easier as a caregiver of a child or someone with a rare, very rare or orphan disease, or without a diagnosis:

• What you need to know about rare diseases;
• Helping without knowing the diagnosis;
• Being a parent caregiver;
• Addressing administrative formalities and taxation.

In Quebec, the first national policy on rare diseases follows on from the Quebec action plan on rare diseases over a 4-year period (2023-2027). The focus is on the recognition and quality of care for people with rare diseases, the organization of care and services, access to care and services, and care protocols.

Regroupement québécois des maladies orphelines

The Regroupement québécois des maladies orphelines (RQMO) supports people with rare diseases and their caregivers who do not have an association for their disease. It is comprised of about thirty patient associations.

It offers the iRARE Centre, an information and support center for rare diseases. The only one of its kind in Canada, it offers a free, bilingual, professional and personalized service.

Caregiver Support Helpline provides phone and email support

Caregiver Support Helpline is available to all caregivers across Québec. Whether you are looking for a listening ear, information or referrals, our counselors are available every day from 8 a.m. to 8 p.m. This service is free and confidential.

• by telephone: 1 855 852-7784;
• by email: info-aidant@lappui.org.

A page on our website is dedicated to the telephone helplines that caregivers can use throughout Quebec.

Rare Disease Day 2023 and the Month of " Zébrier "

International Rare Disease Day is held on the last day of February each year. What better date to symbolize this special day? After all, there is only one February 29 every four years!

Each year, the RQMO also organizes the Month of Zébrier to raise awareness of orphan diseases. In 2022, for example, the Month highlighted the issue of diagnostic errance.