About Rare Disease Day
Rare Disease Day is an international observance that takes place on the last day of February each year. However, in Kenya we will mark it on Saturday, 25th February, 2023. The event will be a hybrid – with in-person attendance at The Nairobi Hospital, Convention Centre from 9.30 am to 1 pm or you can join us online.
The day is dedicated to raising awareness about rare diseases and the impact they have on the lives of those affected by them. The goal of Rare Disease Day is to bring attention to the challenges faced by individuals and families living with rare diseases, and to advocate for increased research and support for these conditions.
About the theme
How to Register?
This event is open to everyone and can be attended in-person or accessed online.
The physical venue will be at The Nairobi Hospital, Convention Centre from 9.30am till 1pm.
To register please click on the eventbrite link:
https://rddke2023.eventbrite.com.
For more information, please contact Rare Disorders Kenya at ask@rarediseasekenya.org or +254 701 025 753.
Don’t miss this opportunity to learn, engage, and make a difference for those living with rare diseases in Kenya.
The Programme
The programme will kick off with a word from the moderator, followed by a video showcasing Rare Disorders Kenya (RDK) and a few of its members sharing their journey.
We will then proceed with speakers sharing the milestones the rare disease community has achieved globally. RDK co-founders will share the local accomplishments in the past year, followed by Rare Diseases International (RDI) who will share the global scope. Samuel Wiafe from Ghana will elaborate the African strides through the lenses of the newly formed Africa Rare Disease Alliance (ARDA).
The event will also feature a panel discussion with representatives from various government bodies including the Ministry of Health, Kenya Medical Research Institute(KEMRI), and National Council for Persons with Disabilities (NCPWD).
We will also have another panel session with representation from the healthcare associations. The final and must attend session will be on patient and caregiver mental health, featuring a notable psychologist who will take us through the importance of taking care of our mental health in this rare disease journey.
The programme will formally conclude at this juncture but guests are welcome to mingle and get reacquainted with each other, more so since the pandemic.
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