A disease is termed as a rare disease if it affects a small percentage of a given population. A disease can be rare in part of the world and common in another part. Most rare diseases are genetic, hence chronic; with a large percentage affecting children.

Rare Disease Day is a day held to raise awareness on rare diseases, improve access to treatment as well as create support networks for individuals living with rare diseases and their families. It is marked on the last day of February each year since 2008.

Since Rare Disease Day was first launched by EURORDIS and its Council of National Alliances in 2008, thousands of events have taken place throughout the world reaching hundreds of thousands of people and resulting in a great deal of media coverage.

Kenya has marked Rare Disease Day from 2014, with Rare Disorders Kenya marking it from 2018. The following are the events since:

2018

  • Rare Disease Day video
  • RDK held its first physical event (and the third physical in Kenya) at Gertrude’s Children’s Hospital (Muthaiga).
  • We had various radio and television interviews with different stations.

2019

  • RDK had a getaway for its members at Olepolos Country Club .. where we bonded as individuals with our respective conditions yet as a group on the same (rare disease) journey.

2020

  • Rare Disease Day video
  • RDK held its second physical event at Gertrude’s Children’s Hospital (Muthaiga).
  • Radio interview with Vybez Radio
  • Facilitated a CME with pediatricians at The Nairobi Hospital