Resources

INFORM RARE researchers, patient partners, and collaborators have developed various resources and tools in the rare disease research area.

 

Patient engagement:

Standard Operating Procedures:

Communications:

Animation Videos:

  • Pediatric rare disease clinical trials animation video (English and French)

  • Exergaming clinical trial for spinal muscular atrophy video (English and French)

  • Canadian PKU registry animation video (English and French)

  • Canadian MPS registry animation video (English and French)