How you can help

ARE YOU A PATIENT OR A CAREGIVER?

Connecting with someone with your rare disease

Many people with a rare disease or the parent/caregiver of a child or adult with a rare disease don’t know anyone else with the same rare disease. People often ask us to find someone with the same or similar disease who lives near them (or at least in their province or in Canada). If you would like to help other people by connecting and exchanging about your experiences, register in our Matching Service.

Participate in educating doctors and health professionals about your disease and help improve care and services in your area

University teaching hospitals often have programs in which you can contribute by speaking about your disease, either to medical students or to doctors during continuing education trainings. Ask your doctor about these opportunities.

Also, many hospitals have “Patient partnership” programs in which patients and caregivers can share their knowledge and experiences to improve the quality of care. Example: Patient partnership program at the University Health Network in Toronto. Ask your local hospital or contact us.

YOU ARE HEALTHY OR YOU DO NOT HAVE AN ILLNESS THAT PREVENTS YOU FROM DONATING SOME BODY LIQUIDS OR TISSUES

Here’s what you can do to help people with rare diseases

Give:

  • Blood
  • Plasma
  • Stem cells
  • Umbilical cord blood
  • Breastmilk

These biological components are the basis of several treatments for many rare diseases. See the website of the Canadian Blood Services to find out if you can be a donor and where to donate.

You could save a life!

Sign your organ donation card

Information about living organ/tissue donations or donations after death:

Ethnicity is important when it comes to blood and stem cell donations.

People of any ethnic background can be affected by a rare disorder. They may have rare blood types or need complex treatments (stem cell transplantations, for example). An ethnically diverse blood supply can make all the difference. Read: Rare Blood Program and Importance of Ethnic Diversity.

People of your ethnic background may need your blood or stem cells to match theirs. Ask about donating.

Scroll to Top