RARE DISEASES INITIATIVE

The initiative seeks to eliminate disparities in patients with rare diseases, using technology to raise awareness and ensuring the welfare and needs of such individuals are met.

In Zimbabwe there is little knowledge concerning rare diseases by both healthcare providers and the public. Because of this, most individuals affected  by a rare diseases fail to get proper diagnosis and treatment for the condition. The lack of knowledge means that there is no statistics regarding rare diseases for example database recording the cases in the community. This makes it difficult to intervene due to lack of adequate numbers which is critical in decision making. The initiative, as a solution looks forward to bridging  that gap of lack of knowledge and access to necessary healthcare services.

The topic of Rare Diseases is often overlooked in developing countries. Rarely are these issues discussed as major public concerns. This is probably contributed by the burden of infectious diseases such as HIV, TB, Cholera etc. This results in all attention being shifted to the common conditions leaving out a grey area of rare diseases. Surprisingly rare diseases are not rare with over 7000 different diseases in this family. This environment makes it difficult for patients to get treatment and support even if they manage to get a diagnosis. The limited options available to such individuals often involves going to other countries for treatment which is often very expensive to do so. The is also an issue of stigma considering the strong cultural beliefs in the society of Zimbabwe. Unusual diseases are often linked to curses and spirituality which often leads to stigmatization in the community. Overall, the problem of lack of knowledge and information causes so may challenges. The Rare Disease Initiative intends to bridge that gap of lack of knowledge and promote access to necessary healthcare services.

The Rare Diseases Initiative is a student led non profit making program aimed at improving the lives of people living with rare diseases through various ways. 

The initiative aims to create a database where information regarding rare diseases in Zimbabwe is captured an organized. This will enable strategic planning of intervention based on the available statistics which will aid to ensure that available services and treatments are given to communities which are in need.  The initiative will do research on the different needs of people living with rare disease so as to provide specific healthcare and welfare services.

The initiative also wants to establishing a health bot which those with rare diseases or suspecting they might have a rare disease can use to get information on the nearest healthcare facility they can go to for help and we aim to achieve this through mapping of  Zimbabwe’s healthcare facilities and resources.

The initiative will certain certain check points in major hospitals or clinics where information is recorded regarding individuals with rare diseases. Recording of footage of the outreaches, campaigns and seminars for posting on  social media will aid in increasing general awareness about rare diseases.

Using the same technology the initiative aims increase awareness to health care professionals and students on rare diseases through organizing workshops, seminars and awareness campaigns in communities and healthcare facilities e.g. medical schools, hospitals and clinics. This will increase knowledge of healthcare practitioners and the public which in turn reduce and ultimately eliminate disparities in health for rare disease patients.

Rare diseases initiative also intends to explore the possibility of bringing genetic counselling and genetic testing technology to Zimbabwean communities for couples especially at risk.

Rare diseases affect all age groups but the majority of patients are children. majority of known people living with rare diseases do not have essential support. Some of the individuals do not know their diagnosis, with some aware but unable to afford the usually expensive medications.The Initiative aims to serve the undeserved communities of people living with rare diseases. It aims at improving the awareness of these conditions among patients and the community. The initiative also focus on providing patients with necessary support they require to improve the quality of life. 

The database will enable clear mapping of rare diseases patients countrywide which will make it easier for interventions to be implemented. Online awareness and campaigns will enable increased knowledge and improve collaboration of different organisation dealing with rare disease. The bot system and checkpoints will also enable patients to get help earlier and at the local facilities.

As medical students, the team is well equipped with knowledge regarding the area we are trying to work on. We are also intense researchers who are always on the lookout for the best ways to help people with rare diseases. The passion and drive can always be under-emphasized.

We also have several experienced specialists in different areas which we can consult on any given challenges. The initiative also works together with an organisation which guide us on the best ways we can use to contribute to the rare diseases community

As people who are currently dealing with rare diseases, we have had the privilege to become experienced enough along the way to be able to handle any demands from the intervention.

Being a volunteer in the rare diseases field I have been able to understand the burden that people living with such conditions have. I have realized that the needs of these people is under emphasized and its time the health sector wakes up to realize this 'silent pandemic'.

My team is the voice of people living with rare diseases from the health sector to the public. We represent the rare diseases community fighting for their welfare and rights to access medical services. We also target stigma and seek to educate the public about these conditions. We also be on the lookout for well wishers who can help and support these individuals 

We have done research via surveys and we are still carrying out some, but we have full understanding of the needs of the community we intend top serve. We have been involved been involved with some organisations in the parallel field to try to get involved on the ground. We have organized and been involved in awareness campaigns and talk sessions whereby we involve patients. These are some of the things which has made us fully understand the needs of the population we want to serve.

Handling rare diseases with modern technology is surely an improved approach. this will surely transform the rare diseases community be it at society level or national level. Creating an online database will improve the data for further research and complete understanding of the level of burden of these conditions. It will also make it easier for interventions to be put in place given that data is available. 

Introducing an digital rare disease bot which provides assistance to patients in need for receiving healthcare services will make sure nobody is left behind as almost anyone can have access to available and nearest health services and options there is. 

The use of online platforms to raise awareness and will also catapult the understanding of these conditions at all levels of society of the modern era.

• The Initiative aims to have at last 50% of all rare diseases cases in Zimbabwe recorded in the database in the next year through advertising, the virtual rare diseases chat bot and a small working group using questionnaires and face to face interviews.
• The Initiative aims to impact at least 50% of healthcare providers and over 1000 tertiary level students through in person campaigns, seminars and workshops. A register system will be used to record number of participants at each event.
• The Initiative aims to directly impact 10% of the general population directly and indirectly through engaging the biggest newspaper houses, radio and TV coverage, social media add-ons, outreaches and awareness campaigns to increase public awareness and handle stigmatization and promote health seeking.
• The Initiative aims reach out to at least 60% of people with rare diseases through the various social media coverage listed above and free health checkups for target symptoms to make them aware that there is help. 

The core technology of our application is Artificial intelligence to impact people's lives. The rare diseases bot will serve as an interactive platform available on mobile cellphones and personal computers to guide and lead whoever is using it whether they may have a rare disease and where to go to. it will also guide the public the community on the topic of rare diseases. The bot will be directly linked to the database and can enter any patient given a diagnosis has been made by a clinician

Th solution currently indirectly serve around 100 people and we intend and expect to directly serve over 1000 people in the next year

Zimbabwe is a developing nation with limited resources and a burden of other diseases. This impedes on operation and support from relevant stakeholders.

Cultural beliefs will hinder progress in terms of eliminating stigma due to strong background beliefs among the public.

Technical challenges such as transport will hinder to reach some areas for campaigns, research and outreaches.

A large proportion of individuals do not have access to mobile cellphones or computers and internet which may com up as another challenge which hinders progress.

 Since this initiative is student led, the number of man power available to do the needed work is low making the number of hours invested in the initiative low due to other commitments.

1. Child and Youth Care - They are a non-profit making organization who have assisted us raise awareness especially among the public. With their assistance we managed to create support groups for patients with rare diseases. We refer some of our patients to them for support since they are also into support certain conditions specifically congenital adrenal hyperplasia patients.

We do not have any other partners currently but are on the lookout for such.

The initiative is a non profit making organisation aimed at improving the lives and wellness of people living with rare diseases. we provide our services to those in need at free of charge. We raise awareness, we voice for them and we refer them to organisations which can offer help. We also will organize and capture their relevant data which will be used for purposes which are only beneficial to the rare diseases community

As a non profit entity we rely on external funding and projects to cater for our costs. at first we need external funding but later on the initiative will operate and run projects which will be able to sustain and cover our needs as we provide service.