Introduction
Attendence
TSHG Conceptualization and Work Plans
Deliberations and Recommendations
Commitments
Way Forward
Appreciation and Acknowledgement
Gallery
On 28th February 2021, Tanzania joined 107 other countries in commemorating Rare Diseases Day. The event was organized by the Ali Kimara Rare Disease Foundation (AKRDF) and the Tanzania Society of Human Genetics (TSHG). The commemoration was graced by Her Excellency Samia Suluhu Hassan, Vice President of the United Republic of Tanzania. Other high-level guests included Dr. Doroth Gwajima, Minister of Health; Dr. Faustine Ndugulile, Minister of Science and Technology; Juma Kipanga, Deputy Minister of Education; and Ali Hamisi Juma, General Secretary in the Ministry of Education of the United Republic of Zanzibar. Also in attendance were Professor Abel Makubi, the Chief Medical Officer; Dr. Magreth Matonya, Director of Special Needs Education; Sharifa Mbarak, Chairperson of AKRDF; Dr. Samson Kilaza, Vice President of TSHG; and Dr. Rafael Malaba, representing the National Health Insurance Fund (NHIF).
In her concluding remarks, Vice President Samia Suluhu Hassan reaffirmed the government’s commitment to supporting people with rare diseases. She pledged to foster a supportive environment through improved healthcare provision, collaborate with AKRDF and TSHG to raise awareness, and work to eradicate harmful beliefs surrounding rare diseases. The Vice President further committed to undertaking a census and creating a national register of children with rare diseases, establishing a coordinated unit within ministries and insurance institutions, and exploring affordable healthcare solutions, including cost waivers and insurance coverage. She also emphasized the importance of promoting homeschooling for children with rare diseases and upholding the 2021 slogan, “Equity for people with rare diseases.”
The commemoration brought together a wide range of participants, including individuals and families affected by rare diseases, political leaders, policymakers from health and education sectors, practitioners, religious leaders, financial institutions, and private hospitals such as the Aga Khan Hospital. Insurance companies, including the National Health Insurance Fund (NHIF), were also represented, making the event a truly inclusive platform for advocacy and action.
Prof. Karim Manji, a pediatrician with over 30 years of experience at the Muhimbili University of Health and Allied Sciences (MUHAS), delivered a presentation highlighting the challenges in managing children with rare diseases. He emphasized the lack of adequate technology for proper diagnosis, including genetic testing laboratories, and the shortage of specialized expertise among healthcare providers. He also noted the clinical, economic, and systemic burden rare diseases pose to the healthcare system, particularly in ensuring equal access to treatment for patients.
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 organizers issued a call to action, pledging to collaborate with partners to implement the recommendations discussed during the commemoration. They highlighted the collective responsibility of all stakeholders in ensuring that children and individuals with rare diseases receive adequate support, live dignified lives, and enjoy respect and protection from both government and society.
The success of the Rare Disease Day 2021 commemoration was made possible through the generous support of sponsors and partners. Special thanks were extended to Aga Khan Hospital, Clouds Media Group, CRDB Bank, ASHTON, Mo Dewji Foundation, Save the Children, and Serena Hotels. The organizers expressed their deep appreciation to the sponsors, attendees, and all individuals who contributed to making the event a remarkable success.
