Introduction
Pre-event Awareness Campaigns
RDD 2022 Commemoration
Deliberations and Recommendations
Awards and Recognition
Media Coverage
Post-event Activities
Conclusion
Partners and Sponsors
Gallery
Rare Diseases Day (RDD) is an annual global event held on 28th or 29th February to raise awareness about rare diseases and advocate for the 400 million people affected worldwide. The commemoration aims to foster solidarity among patients, families, and caregivers. Globally coordinated by the Rare Diseases Day Foundation, RDD has been celebrated in Tanzania since 2016 with growing success each year. In 2022, Tanzania observed the event on Sunday, 27th February at the Golden Tulip Hotel in Zanzibar, instead of 28th February because it was a working day. The theme for the year was “Equity for People Living With a Rare Disease.”
The commemoration was jointly organized by the Ali Kimara Rare Diseases Foundation (AKRDF) and the Tanzania Human Genetics Organization (THGO), with objectives including assessing progress from previous commemorations, recognizing individuals and institutions that advanced the Rare Diseases agenda, promoting public awareness, scaling up advocacy for inclusion of children with rare diseases, and amplifying Tanzania’s voice in the global Rare Diseases movement.
Outstanding contributions to the Rare Diseases agenda were recognized during the event. Hon. Samia Suluhu Hassan, President of Tanzania, was honored for her role in including rare diseases in the national budget and advocating for homeschooling for children with rare diseases. Other awardees included former President Hon. Jakaya Kikwete, Hon. Ahmed Nassor Mazrui, Mr. Mohamed Kimara, Dr. Raphael Mallaba, and Mr. Mohamed Rashid for their exceptional support, advocacy, and educational efforts in the field.
From 17th–28th February 2022, pre-event campaigns were conducted to raise public awareness about rare diseases. Social media campaigns featured educational posters on platforms such as Instagram, Twitter, Facebook, and LinkedIn, as well as a poster design competition targeting college and university students.
The competition encouraged students to create informative posters about rare diseases, generating public engagement and discussion. A total of 23 posters were submitted, with three winners recognized: Mr. Tatheer Mahershah (KCMUCo), Ms. Mehdiyah Manji, and Mr. Dickson Daniel (KIUT). In addition, print and broadcast media interviews were conducted by organizers, including Dr. Deus Ishengoma and Ms. Sharifa Mbarak, highlighting both scientific insights and patients’ experiences to increase awareness and stimulate policy advocacy.
The main RDD event on 27th February 2022 brought together 161 participants, including government officials, patient groups, healthcare providers, student associations, journalists, and representatives from private and public organizations. The event featured speeches from government leaders, scientific talks, messages from organizers, a special song from schoolchildren, and an awards ceremony recognizing outstanding contributions to the Rare Diseases agenda in Tanzania. The Guest of Honour was Hon. Othman Masoud Othman, First Vice President of the Revolutionary Government of Zanzibar, who emphasized the importance of collaboration among government, NGOs, and private sectors to combat rare diseases, provide proper health and education services, and reduce stigma. Other prominent guests included Hon. Ahmed Nassor Mazrui, Minister of Health, and representatives from education, NHIF, and special needs services.
The event provided an opportunity for families, children with rare diseases, and genetics experts to voice their concerns and share experiences. Among the key recommendations were the need to modify the education system to support children with rare diseases, such as through homeschooling. There was also a call for clearer community awareness of rare disease-related policies and responsible authorities. Participants emphasized the importance of conducting a national census and establishing a register of children with rare diseases to better understand prevalence and needs. Additionally, recommendations were made for the Ministry of Health to consider cost waivers for children with rare diseases in government hospitals, for NHIF to develop special benefits, and for private sectors to be included in rare disease research and innovation.
The event was widely covered through live streaming on ZINJIBAR TV, ZCTV, and the YouTube channel of the First Vice President of Zanzibar, in addition to reporting by Zanzibar Broadcasting Corporation (ZBC), Brown TV Online, Zanzibar Leo, and Mwananchi newspapers.
Following the commemoration, the Minister of Health of Zanzibar, Hon. Ahmed Nassor Mazrui, donated a wheelchair to Ms. Fatma Abubakar, a patient with progressive muscular dystrophy. Participants recommended, and the Revolutionary Government of Zanzibar agreed to implement several measures, including conducting a census of rare disease patients, establishing a special unit within the Ministry of Health, improving healthcare facilities, providing homeschooling opportunities, running mass awareness campaigns, issuing special identification cards for patients, and waiving costs for treatment of rare diseases. An implementation framework was prepared to ensure these recommendations are executed collaboratively with stakeholders.
The 2022 Rare Diseases Day commemoration was successfully implemented, engaging multiple stakeholders in advocating for patients with rare diseases. Recommendations made during the event have been accepted by the Revolutionary Government of Zanzibar and aim to enhance access to healthcare, education, and other supportive services for patients. Continued engagement with patient groups, private sector partners, and government institutions will further strengthen initiatives such as homeschooling and improve the overall welfare of individuals living with rare diseases and their families.
