Rare diseases are...well rare, but pain and suffering associated with them is not! It requires early recognition or even preempting the pain inoder to prevent development of chronic an drefractory pain.

In commemoration of the International Rare Diseases Day, I bring you an episode focused on promptly identifying and managing the pain associated with pediatric rare diseases and the challenges associated with that.

Takeaways in This Episode

• Why we should talk about rare diseases.
• What makes a disease rare and what is an orphan disease
• Which rare diseases are commonly encountered amongst children
• How big an issue is pain management for these children
• Common causes leading to pain experiences in a rare disease
• Common challenges to managing pain in a rare disease
• What should a healthcare professional know and do about managing pain for these children

Links

Pedia Pain Focus #51. Digital Interventions for Self Management of Pediatric Pain

National Organization for Rare Disorders

American Syringomyelia and Chiari Alliance Project

The Ehlers-Danlos Society

Society for Pediatric Pain Medicine

IASP - Pain in Childhood

Pediatric Pain Listserve

Proactive Pain Solutions