Botswana Organisation for Rare Diseases, a registered NGO, is a voice for vulnerable communities – one that not only provides support for those impacted by rare diseases, but also, advocates for universal healthcare to ensure equitable access for all Rare Disease patients. Botswana Organisation for Rare Diseases brings international best practice and local innovation together in terms of medical intervention and treatment, drives a collective voice for medical advancement and support and advocates the right to medical advice and assistance. Botswana Organisation for Rare Diseases plays a fundamental role in bridging the gap between vulnerable communities and medical advancement.

A condition is considered rare when it affects 1 person in 2000 according to Eurordis. Currently, South Africa does not have its own definition of a rare disease which is one of the major issues needing to be addressed by government.

There may be as many as 7,000 rare diseases, so whilst they are individually rare, they are collectively common.

Rare diseases are present across the medical spectrum. Some are widely recognised by name, such as cystic fibrosis, while others are less known, such as cat eye syndrome. There are rare neurological and neuromuscular diseases, metabolic diseases, chromosomal disorders, skin diseases, bone and skeletal disorders, and rare diseases affecting the heart, blood, lungs, kidneys, as well as other body organs and systems.

There are many different causes of rare diseases. The majority are thought to be genetic – directly caused by changes in genes or chromosomes. In some cases, genetic changes that cause disease are passed from one generation to the next. In other cases, they occur randomly in a person who is the first in a family to be diagnosed. Many rare diseases, including infections, some rare cancers, and some autoimmune diseases, are not inherited. While researchers are learning more each year, the exact cause of many rare diseases is still unknown.

Researchers have made progress in learning how to diagnose, treat and even prevent a variety of rare diseases. However, there is still much to do because most rare diseases have no known treatments.

Difficulty in obtaining an accurate diagnosis (this can take years, which can be critical for stopping or halting the progression of a disease)

Limited treatment options

Little or no research being done on the disease

Difficulty finding physicians or treatment centres with experience for a particular disease

Paying for treatments that are generally more expensive than those for common diseases

Reimbursement issues related to private insurance and medical aid

Difficulty accessing medical, social, or financial services or assistance because those making the decisions are not familiar with the disease

Feelings of isolation and of having been abandoned or “orphaned” by our health care system

If you/a loved one has just been diagnosed with a condition, you are probably feeling very isolated and alone in your journey. You may be scared, and fearful about your future with many unanswered questions.

BORDIS may not have all the answers, but we are here to support you. Please complete the relevant registration form on the home page, which will provide us with the necessary consent and information required to refer you to the most appropriate support.

RDSA understands that many of our patient members may not yet have a diagnosis and would like to try our best to refer you to the correct centres for the most appropriate care.

Please register as a patient and include a list of your symptoms. When asked “diagnosis” on the form – please indicate undiagnosed.

We will then review your information and try to refer you/your loved one to clinics and doctors treating patients with similar conditions and symptoms.

Please note: Include as much info as you can in your registration form, as this assists us to understand your situation best.

Please register as a patient and include a list of your symptoms. We will then review your information and try to refer you to clinics and doctors treating patients with similar conditions and symptoms.

You can also chat to support groups and patients and find out about therapies and treatments which may have worked for relief of similar symptoms. Please note that you will need to opt in to these support groups, and any information you share there will be available to other support group members.

We understand that many of our patients would like to connect with others with similar conditions, so we have developed various online tools and support mechanisms to facilitate this.

Please register as a patient/care giver/family member via our home page. Once completed, you will receive an automated email which will provide you with various links to our online support groups.

Please note that you will need to opt in to these support groups, and any information you share there will be available to other support group members.

No. We provide support to ALL patients impacted by Rare Diseases regardless of their medical aid or where they access services.

When you register as a member of BORDIS, you will receive an automated email which will guide you on the various support offered and communication methods which are available to you as a BORDIS member.

Having registered as a member of BORDIS you will also automatically be added onto our mailing list and will receive news and updates from us.

However, we realise that different members require different levels of support, so we rely heavily on your guidance in terms of your needs personally. If you feel you require more support that the online platforms etc that we have set up, please let us know via email to info@bordis.org or via phone call at +267 71692565.

Once you are a BORDIS member, you will also have access to our community app. The benefits of this app include:

Events and Important Dates calendar

Disease specific resources

Notice board

Secure enquiry platform

Access to latest news and advocacy efforts

BORDIS has an extensive healthcare referral network which allows us to connect you with others treating patients with the same/similar conditions.

We also have access to numerous educational resources that can be used to better support your rare patient.

Please do refer your patient to us too, to ensure that they receive the best support possible.

BORDIS provides support for HCPs in a number of ways:

Providing of referral mechanism for HCPs to connect with other treating HCPs

Development of advisory boards

Participation and circulation of policy and legislation documents

Council for medical schemes complaints and appeals

Circulation of disease specific guidelines

Hosting of Rare Disease Conference (RareX)

Capacity building of support groups

Providing an umbrella organisation for support groups to function under

Host networking and mentorship events

Participation in awareness events

Development of educational resources which are disease specific

A registry is a collection of information about individuals, usually focused around a specific diagnosis or condition. Some registries collect information that can be used to track trends about the number of people with diseases, treatments and relating information. Other registries invite people to sign up to be contacted about participating in clinical research. Botswana is one of the few countries who currently does not have a registry – making it difficult to substantiate to Government, Dept of Health and potential Sponsors why research and funding is necessary within our large and unaccounted for rare community. Individuals provide information about themselves to these registries on a voluntary basis.

Support groups should allocate a project champion to the patient registry to ensure it receives adequate attention and is kept up to date. Support groups can contact BORDIS for a registry template, information on how best to manage it as well as webinars and tutorials to share with your patients. Contact info@bordis.org for more information.

Our RARE ACTIVist programme is aimed at all those wanting to assist us in raising funds and awareness for our cause, our patients and ultimately the rare disease community. Be it volunteering at an event, hosting a family day, or partaking in one of our many sporting teams and using your mobility for the advantage of others, there is always a way for you to get involved

A Rare ACTIVIst is an individual who wants to use their mobility to benefit those without it. Events that Rare ACTIVIsts partake in include running, swimming and cycling, as well as fundraising and volunteering.

The easiest way to become a Rare ACTIVist is to register on the BORDIS website. There are many things you can do – run, swim, cycle, fundraise or volunteer.

Once you gave registered, you will be added onto our database and will be notified of upcoming events which you can partake in.

If you have something novel you would like to do, you can always email us at info@bordis.org and we will do our best to assist you.

Yes, absolutely. We would love to have your assistance with our fundraising efforts.

Each year, people across the country host a fundraiser or event to benefit BORDIS and help us achieve our objectives.

We have created a fundraising toolkit which will assist you in being able to setup your fundraiser for BORDIS.

You can download this toolkit here.

BORDIS has various programmes and projects at any given time, all of which align with our objectives of improved navigation, advocacy and engagement.

Funds raised are used to support these objectives in a variety of ways, such as:

Provision of services for rare disease patients

Implementation of referral pathways for patients

Maintenance of patient support groups

Assistance with patient advocacy and case management

Legislation and Policy Review

Development of patient educational resources

Monitoring of service delivery

Awareness campaigns

They create pathways for patients to successfully navigate reimbursement processes and access to treatment

Provide a platform to meet fellow patients and provide support if needed when dealing with medical professionals

Creates awareness of various diseases which hopefully will help the community at large to be more understanding.

Lobby and advocate with policy makers to ensure equitable access to health for those impacted by a rare disease

Connect families impacted by similar conditions

Hosting of family days and patient mornings

Providing access to support mechanisms

Dedicated caregiver events and discussions

BORDIS was founded by a family whose two children have rare diseases. Their journey to get diagnosis and manage the conditions was challenging and that inspired them to raise a voice for Rare disease patients and their families in Botswana. BORDIS is a non-profit making patient advocacy NGO which is registered with the Registrar of Societies in Botswana. BORDIS membership is open to patients and their relatives, individuals and organisations supporting BORDIS’ work as well as other patient advocacy groups.

As an NGO, BORDIS is involved in key areas of research that underpin our work in ensuring that people living with rare diseases and congenital disorders experience better recognition and support, improved health services and a better life overall. Our advocacy and empowerment activities require a robust, evidence-based foundation which can only be achieved through elements of research. We focus on key research issues that are of relevance to the international and local rare disease and congenital disorder community . In addition, we offer a meeting point for the rare disease and congenital disorders community in Botswana in the form of the Research Hub. Finally and importantly, the connection between researchers and patients, who are the lay experts in their condition has been missing until now. The research focus at BORDIS provides this linkage and an opportunity for a dialogue.

No, the mandate of BORDIS is to empower patients through improved advocacy, navigation and community engagement and therefore, we do not fund research. However, research opportunities are registered on our Research Hub which is accessible to BORDIS members.

The Research Hub is a meeting point for researchers, academics and students working in the area of translational research of rare diseases and congenital disorders in Botswana. It aims to facilitate connections between researchers in this field and to prevent duplication of effort in a resource scarce environment.

Yes. As a BORDIS member you can access the Research Hub to identify other relevant research that has been registered.

Yes. As a BORDIS member you can access the Research Hub and search our Research Hub database.

Yes. As a BORDIS member you can access the Research Hub and add your research.