RARE DISEASE DAY
Rare disease Day is a global awareness campaign that takes place on the last day of February each year. This annual event is geared towards creating awareness on the impact that rare diseases have on over 300 million people around the world.
The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.
The inaugural Rare Disease Day in Kenya was held on February 2014, and the awareness campaign has since gained momentum attracting different stakeholders from the general public to healthcare and scientific professionals and even decision makers.
The day provides an opportunity for patients, family and friends to interact and share on different experiences and challenges.
For advocates of rare diseases, Rare Disease Day is an opportunity to create, and increase, awareness in the general public, and with policymakers, around the need for research, increasing equity and raising the patient voice as stipulated by the various Rare Disease Day themes over the years.
RDK TIMELINE
- We raised awareness by talking about Rare Disease Day on a morning talk show Watch Now?.
- We also raised awareness through social media and printing of bumper stickers.
- We created awareness through social media.
- We held the first ever rare disease day physical event in Kenya. This saw different people with different rare conditions come together to celebrate the day Watch Now?.
- We also raised awareness through social media and printing of bumper stickers.
- We held the second rare disease day physical event in Kenya (Event Video).
- We also raised awareness through social media and printing of bumper stickers.
- 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.
- 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.
- 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.
- COMING SOON
- COMING SOON
2022
RARE DISEASE DAY
UN Resolution and what it means for Kenya
Importance of Research in Rare Diseases
Importance of Patient Empowerment in Rare Disease Management
The Why and How of Individual Advocacy
Panel Discussion