Introduction
Attendance
Deliberations and Recommendations
Commitments
Appreciation and Acknowledgement
Partners
Gallery
On 29th April 2020, Tanzania joined over 100 countries to commemorate Rare Disease Day. The event was jointly organized by the Ali Kimara Rare Disease Foundation (AKRDF) and the Tanzania Society of Human Genetics (TSHG). It was graced by Hon. Dr. Hamisi Kigwangala (MP), Minister for Natural Resources and Tourism, who represented Her Excellency Samia Suluhu Hassan, Vice President of the United Republic of Tanzania.
Other high-level guests included H.E. Dr. Jakaya Mrisho Kikwete, Former President of the United Republic of Tanzania; Hon. Anne Makinda, Former Speaker of Parliament and Chairperson of the National Health Insurance Fund (NHIF); Hon. Simai Mohamed Said (MHR), Deputy Minister of Education and Practical Education; and Dr. Magreth Matonya, Director for Disabled Education at the Ministry of Education and Vocational Training, representing Hon. Prof. Joyce Ndalichako (MP), Minister for Education and Vocational Training.
The commemoration brought together a wide cross-section of participants, including families affected by rare diseases, political leaders, health and education policymakers, practitioners, religious leaders, private hospitals, and insurance companies. A total of 197 participants attended the event, representing about 28 organizations.
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Participants
The event provided a platform for the voices of children living with rare diseases, their families, and human genetics experts to be heard. Testimonies highlighted challenges such as:
- Limited access to health services, especially palliative care.
- High cost and unaffordability of treatment.
- Lack of recognition of rare diseases in national health policies, leading to a shortage of specialists and clinical guidelines.
- Inadequate social support services, including family counseling.
- Limited educational opportunities, as current policies do not accommodate homeschooling for children with rare diseases.
- Persistent stigma and misconceptions in society due to low awareness.
From these discussions, several recommendations emerged:
- Conducting a national census and establishing a rare disease registry.
- Creating a designated Rare Disease Unit within the Ministry of Health.
- Providing treatment waivers for children with rare diseases in government hospitals, and ensuring NHIF offers tailored benefits.
- Issuing special identification cards to ease referrals and access to national hospitals.
- Recognizing and supporting homeschooling for children unable to attend regular schools, with government-provided teachers.
- Increasing government and private sector investment in rare disease research to improve prevention and management.
On behalf of the government, the Vice President—through a speech delivered by Hon. Dr. Hamisi Kigwangala—committed to addressing the concerns raised. Key commitments included:
- Willingness to act on the recommendations voiced by families, children, and professionals.
- Considering the establishment of a Rare Disease Coordination Unit within the Ministry of Health.
- Initiating a rare disease census and registry.
- Exploring ways to improve affordability and access to healthcare, including potential cost waivers and expanded health insurance.
- Supporting and promoting human genetics and rare disease research in Tanzania.
- Collaborating with AKRDF and TSHG to promote public education and awareness of rare diseases.
The success of Rare Disease Day 2020 was made possible through the generous support of several sponsors, including Aga Khan Hospital, Clouds Media Group, CRDB Bank, Dar es Salaam Flying Doctors, i-View Studio, Mo Dewji Foundation, Save the Children, and Serena Hotels.
Finally, the Tanzania Society of Human Genetics and the Ali Kimara Rare Disease Foundation extend heartfelt appreciation to everyone who attended and contributed to the event’s success.
The high table on rare diseases day
His Excellency Dr. Jakaya Mrisho Kikwete, Former President of the United Republic of
Tanzania,in his speech on rare disease commemorations- Picture of a high Table with rare disease children (front row), From left, Dr. Mohamed
Alimohamed ,General secretary of TSHG, Hon. Anne Makinda, Former Speaker of the
Parliament and the Chairperson of the National Health Insurance Fund (NHIF); Ms. Sharifa
Mbarak, Founder and chairperson AKRDF, His Excellency Dr. Jakaya Mrisho Kikwete, Former
President of the United Republic of Tanzania,Hon Dr. Hamisi Kigwangalla (MP), Minister of
Natural Resources and Tourism; Hon. Simai Mohamed Said (MHR), Deputy Minister of
Education and Practical Education Zanzibar; and Dr. Magreth Matonya, Director for Disable
Education at the Ministry of Education and Vocational Training on behalf of Honourable Prof.
Joyce Ndalichako (MP), Minister for Education and Vocational Training 
Hon Dr. Hamisi Kigwangalla (MP), Minister of Natural Resources and Tourism, delivering
speech on behalf of Her Excellency Samia Suluhu Hassan, Vice President of the United Republic
of Tanzania
Honourable Simai Mohamed Said (MHR), Deputy Minister of Education and Practical
Education
The General Secretary of the Tanzania Society of Human Genetics, Dr. Mohamed Alimohamed
on his speech and word of Wwelcomein commemoration of Rare Disease Day
Ms. Sharifa Mbarak delivering a speech on her experience on raising kids with rare diseases (a
founder and chairperson of AKRDF)
Dr. Ishengoma (National Institute of Medical Research), speaker on rare diseases.
Ali Kimara, a child with rare disease, reads a poem for the guests of honour and invitees during the commemoration of rare disease day
