BORDIS was founded by a pair of parents with rare children. Their journey to get diagnosis and manage the conditions was encouragement to Raise a voice for Rare diseases patients and their families in Botswana. BORDIS was established to bring solutions to the many challenges of management of rare diseases in Botswana. A lack of awareness about rare diseases even among health professionals delays diagnosis which can take many years. Lack of the right infrastructure, and in some cases prohibitive costs of diagnosis and treatments are often used to deny Rare diseases patients the necessary healthcare in an equitable manner as any patient. Botswana does not have a national policy or any form of guiding documentation specific to rare disease, this leaves Rare disease patients Orphaned due to lack of Government commitment to diagnose, treat, or manage their conditions according to their needs.
Botswana has a small population and due to this there are no rare disease specific organisations. BORDIS therefore servesa collective voice of rare disease patients and as an umbrella organization for rare disease patients and other stakeholders throughout the country. The membership of BORDIS is made of patients and their families, health professionals and different individuals and organisations with an interest in supporting the BORDIS vision.
To create an environment that enables Rare disease patients to thrive
To build strong collaborations and networks in Botswana and globally to harness resources and any necessary inputs to ensure access to diagnosis, right treatments and management by Rare disease patients in Botswana.
- To support and advocate for equitable diagnosis, access to appropriate quality health care and treatment for rare diseases patients.
- To offer patients and families affected by rare diseases the material, financial and social support to maintain their dignity and respect.
- To work closely with the government of Botswana in policy development and any necessary documents that guide in management of rare diseases in Botswana.
- To be the primary source of information on rare diseases in general and in Botswana. in addition the society will develop and disseminate information to patients, parents, carers and the general public about rare diseases, as authorized by relevant authorities.
- To support capacity building and networking opportunities for health care professionals to ensure better identification and management of rare diseases in Botswana.