Description
The Saudi Society of Medical Genetics (SSMG) in collaboration with Pfizer Saudi Arabia are planning to hold an awareness campaign in celebration of Rare Disease Day in February 2022. The main objective of this campaign is to raise awareness among the public, health professionals, and decision makers about rare diseases and their impact on both individuals’ lives and general public health. It also aims to encourage researchers and advocates to address the needs of those living with rare diseases.
The objectives and activities of this project are listed below:
Objective one: Raise awareness of non-genetic health professionals
Activity: Virtual Scientific webinar
Collaborator: Department of Genetic Medicine, College of Medicine, KAU
Date: 15 February 2022
Objective two: Raise public awareness regarding rare genetic disorders including their etiology, how to recognize them, how to prevent them, and when to see a genetic specialist
Activity: Art gallery of 15–20 paintings inspired by and depicting the life stories of 15–20 individuals
with rare diseases. For this event we chose to visually represent the stories of individuals who live with rare diseases by collaborating with local artists who can transform the individuals’ lived experiences into wonderful pieces of art; these will deliver the message and emotionally affect viewers. It is our hope that this will allow even more people to participate in Rare Disease Day and enable the campaign’s powerful message to reach a wide audience.
Collaborator: Department of Genetic Medicine, College of Medicine, KAU
Date: 17-19 February 2022 (Jeddah city)
Objective three: Raising awareness about rare disease among schoolteachers and parents
Collaborator: Princess Al-Jawhara Center of Excellence in Research of Hereditary Disorders
Activity: Arabic virtual webinar
Date: 20 February 2022
Objective four: Engaging affected individuals in public activities
Activity: Fun day for teenagers with rare diseases, during which they will have the opportunity to create their own colorful paintings with the help of local artists. They will also have the opportunity to do yoga-like exercises under the supervision of well-trained instructors.
During the day’s fun activities, parents will come together in a small support group led by specialized health professionals (genetic counselors) to facilitate reflection and sharing of their experiences.
Collaborator: Alfaisal University
Date: 24 February 2022 (Riyadh)