On 28th February, 2022 the world will mark the Rare Disease Day.
The aim of the day is to raise awareness about rare diseases and fostering solidarity for people and families who are shouldering the burdens of these diseases. In Tanzania, the event will be commemorated for the first time in Zanzibar after successfully hosted for 4 years consecutively in Tanzania Mainland.
The event will be co-hosted by Ali Kimara Rare Disease Foundation (AKRDF) and Tanzania Human Genetics Organization (THGO) in collaboration with the Revolutionary Government of Zanzibar. The guest of honor is expected to be His Excellency Dr. Hussein Ali Mwinyi, President of Zanzibar.
State of the Rare Diseases Worldwide
It is estimated that there are about 6,000 rare diseases and about 300 million people living with them globally, which represent less than 6 percent of total global population. 72 percent of rare diseases are genetic while others are results of infections. Also, 70 percent of these diseases are said to start in childhood and with 30 percent of victims dying before age of 5.
Many of the rare diseases are not easily diagnosed and even when diagnosed, they cannot be treated. They need lifetime care, support and disease management which can be overwhelming for patients and families. The fact that these diseases are rare and affects few people, makes them often forgotten in healthcare policies and provision. This is more evident in developing countries including Tanzania, where data are inadequate or unavailable.
Lack of public education, data and policy interventions remains a barrier for children with rare disease to access health and related services such as education. As a consequence, there is a growing ignorance about the diseases which encourages uninformed cultural beliefs and raising stigma. In turn, many parents and families are discouraged to come out and seek the needed professional care and support.
Why Ali Kimara Rare Disease Foundation and Tanzania Human Genetics Organizations?
Ali Kimara Rare Disease Foundation is named after a Zanzibari born, Ali Kimara, 10 years old boy who lives and battling with a rare disease since he was 2 years old. Ali lost his sibling, her sister Nasreen with a rare disease at the age of 3. The painful experiences and exposure to the reality and challenges of living with rare disease, was the reason behind the establishment of the Foundation. The purpose of the Foundation is to raise awareness and advocate for the consideration and inclusion of children living with the rare diseases in health and education policies in Tanzania.
Tanzania Human Genetics Organization (THGO) was founded in 2017, launched in 2019 and formally registered in 2021 with the overall mission of coordinating and enhancing human genetics research, training, advocacy and related activities in the community. THGO activities are aimed at generating knowledge and recommendations for the prevention, diagnosis and treatment of genetic diseases and promotion of health in Tanzania. THGO brings together scientists working on human genetics and related disciplines in Tanzania into a network to expand research in human genetics. It fosters awareness of human genetics and genomic research in Tanzania and promoting the development of effective public policy in the field.
The Rare Disease Day
The day was first commemorated in 2008 by 18 countries. 100 countries in the world commemorated this day in 2019. Among them there are 5 African countries of Zambia, Lesotho, Namibia, Niger and Nigeria. Rare Disease Day has been commemorated in Tanzania since 2016 with recorded success year after year. The Rare Disease Day 2021 was graced by her Excellency Samia Suluhu Hassan (President of the United Republic of Tanzania), then Vice President of the United Republic of Tanzania. This year commemorations will take place at the Golden Tulip Hotel on the 27th February, 2022. The theme of the commemoration this year is “Equity for People Living with a Rare Disease”.
The Revolutionary Government of Zanzibar actively participated in Rare Disease Day commemorations through the Ministry of Education and Practical Training and Ministry of Health, Social Development, Elderly, Gender and Children. Follow up official visits have been conducted by the AKRDF and THGS to the government of Zanzibar to disseminate the report and matters arising from the commemoration.
The advocacy undertaken in the last two Rare Disease Days have resulted into a policy shift on Tanzania Mainland’s Education Policy. The government of the United Republic of Tanzania for the first time allowed ‘home schooling’ for children living with rare disease, and officially Ali Kimara was registered as the first student in Tanzania to study from home. Consequently, the rare disease was included into reviewed Special Needs Education Policy (2021). Rare diseases were also mentioned as a new area of focus in health interventions in the Budget Speech of the Minister for Health, Community Development, Gender, Elderly and Children of the United Republic of Tanzania.
This year commemoration will be preceded by a weeklong public campaign to raise public awareness of rare diseases in Zanzibar. The activities will include the following:
- Social Media Campaign
- TV and Radio Interviews
- Community outreach
The commemoration event will involve presentations and experience sharing from experts of genetic and rare diseases, testimony from the survival of the rare disease and experience sharing from families raising children with rare diseases.
The Rare Disease Day commemoration in Zanzibar will provide an opportunity to achieve two strategic gains. First, to wage a public awareness on the state and plight of the rare diseases in Zanzibar and Tanzania in general. And second, to raise attention of political leadership and among policy makers on the necessity of inclusion of rare diseases into health and related government policies and programs.