Table 1 Detailed information about the “Call for Action” for RDs in Tanzania
S/N | Objective | Activities | Expected outcome | Responsible institution |
|---|---|---|---|---|
1. | Rapid census and demographic data | 1. To conduct an immediate census in order to obtain data that will enable the identification of children/individuals with rare diseases (RDs) in the country, including personal identity, location, type of diseases and other information | Census survey report and a database of RDs | THGO/AKRDF |
2. To establish a hospital registry for children/individuals with RDS country-wide and link it to other national databases | Registry of children/individuals with RDs | MoH/PO—RALG & THGO/AKRDF | ||
2. | Diagnostic services, care, treatment and health financing | 3. To strengthen the capacity of the health system (including health facilities) to provide diagnostic services, care and treatment to children/individuals with RDs. This should include the establishment of a formal referral system and specialized clinics with specialists for RDs | Skilled experts capable of managing patients with RDs National guidelines for referral of RD patients | MoH/THGO/Medical schools |
4. To establish neonatal screening services in maternal clinics in order to identify infants with RDs. This will ease the treatment of infants with treatable RDs and management of the condition that cannot be treated | Established services for neonatal screening | MoH/THGO/Medical schools | ||
5. To offer special IDs to children/individuals with RDs to enable them receive services in referral and national hospitals with less or no bureaucracy by taking into consideration that the services they require are provided thereto | IDs offered to children/individuals with RDs | MoH | ||
6. Establishment of a department/unit for RDs in the relevant ministries in Tanzania | Department/Unit for RDs established | MoH/MoE, Ministry of Social Welfare | ||
7. Orphan drugs and necessary supplies for children/individuals with RDs should be made available and accessible at all times | Orphan drugs available in specialized hospitals | MoH | ||
3. | Policies, public education, awareness and advocacy | 8. Establishment of a genetic counselling policy as well as prenatal screening of couples to enable them to plan childbearing in accordance with their genetic status | Policy and guidelines for genetic counselling and prenatal screening established | MoH |
9. The government and health Insurance operators including the National Health Insurance Fund (NHIF) should offer special insurance to children/individuals with RDs. If possible, children/individuals with RDs should get a total waiver of medical costs including costs for their medications | Policy and/or guidelines on Health Insurance of children/individuals with RDs developed and in use | MoH, NHIF, THGO/AKRDF | ||
10. Policies and laws should be established/reviewed in order to ensure that children/individuals with RDs are provided with their constitutional right and important services including the right to education in a conducive environment by taking into consideration of their conditions | Policy, legislation and/or guidelines on essential social services for children/individuals with RDs developed and in use | MoH, MoE, Ministry of Social Welfare, THGO/AKRDF | ||
11. Establishment of policies that will protect and prioritize children/people with RDs when attending health facilities, as applied to elders and pregnant women (The fee waiver policy of Tanzania) | Policy and/or guidelines on essential health services for children/individuals with RDs developed and put to practice | MoH, THGO/AKRDF | ||
12. To educate the general public, parents and families to bring children/individuals with RDs to the health facilities so they can access medical services and get the right treatment, counselling and other appropriate medications as well as supportive services | Guidelines for public education and provision of medical services to individuals with RDs developed and used | MoH, MoE, Ministry of Social Welfare, THGO/AKRDF/Other patients’ groups | ||
13. To advocate for and provide public education for the aim of eliminating stigma to children/individuals with RDs | Guidelines for public awareness about RDs developed and in use | MoH, MoE, Ministry of Social Welfare, THGO/AKRDF//Other patients’ groups | ||
14. Social protection experts should closely look into ways/procedures which will offer protection to children/individuals with RDs from various dangers/harms, known and unknown | Guidelines on protection of individuals with RDs developed | MoH, MoE, Ministry of Social Welfare, THGO/AKRDF | ||
4. | Research, innovation and public private partnership | 15. THGO and medical experts should provide recommendations and advice to the government and other stakeholders on what should be done in the fight against RDs in the country. This should include basic, applied and operational research on different aspects of RDs | Research on RDs undertaken Findings synthesised and disseminated Policy recommendations developed and disseminated | THGO/AKRDF/Medical schools/Research Institutions/Medical association of Tanzania |
16. The government as well as other stakeholders should promote and support the implementation of genetic/genomic research including the Tanzania Human Genome project, in order to generate important genetic data of medical and pharmacogenomic values | Genomics capacity for RDs established and strengthened Genetic/Genomics research undertaken, and findings disseminated | MoH, MoE, Ministry of Social Welfare, THGO/AKRDF/Medical schools/Research institutions | ||
17. To establish and run a network of stakeholders with common interest in RDs (Tanzania Rare Diseases’ Network). The network should play a key role in providing public education, awareness and advocacy in order to enhance the fight against RDs | Tanzania Rare Diseases’ Network established | MoH, MoE, Ministry of Social Welfare, THGO/AKRDF/Other patients’ groups |