E-Ubuzima

Albinism is a rare genetic disorder where you aren’t born with the usual amount of melanin pigment. The prevalence of albinism varies across the world. According to the World Health Organization, estimates vary from 1 in 5,000 to 1 in 15,000 people in Sub-Saharan Africa. In Europe and North America, 1 in 20,000 people have the condition.

Persons with albinism in sub-Saharan Africa including Rwanda face multiple challenges which restrict their daily lives. These include visual impairments and extreme vulnerability to skin infections and cancer because they lack melanin in their skin. As a result, almost all die from skin cancer before the age of 40.

People with albinism also face negative attitudes and misunderstanding from their communities and persecution by unscrupulous individuals in search of power and money, because in many parts of East Africa it's believed their body parts bring great wealth. Limbs, hair and nails are in high demand by witch doctors, and because of this people with albinism often live in constant fear of their lives.

such challenges mean that people with albinism are often excluded from education and They lack access to basic medical care and most don’t have the knowledge or money needed to adequately protect themselves from the sun.

We are supporting more than 1,000 people with albinism to improve all aspects of their lives including access to improved livelihoods and access to dermatology, Ophthalmology and other health care services. We are working in partnership with Rwanda Albinism Network of Persons with Albinism (RAN) to help Persons with albinism to feel safe, accepted and included within their schools, health care facilities and communities.

Our dermatological, Ophthalmological and  Mental health support to access to protective resources including high sun protection factor (SPF 50+) sunscreen and wide-brimmed hats along with regular skin clinics for 1,000 Persons with albinism.

We have introduced cryosurgery, using liquid nitrogen to remove pre-cancerous lesions from the skin of people with albinism, for the first time in Rwanda. This vital work is stopping skin cancer in its tracks.

With Expert assessment to assess the best intervention required to improve vision for people with albinism. These include prescription photo-chromic (react-to-light) spectacles, monocular and magnifiers provided to More than 400 Persons with Albinism.

E- Ubuzima -is an open source platform used to build Android-based mobile application for low-resource settings. The mobile applications can be used as case management tool for tracking beneficiaries through a lifecycle of services, in addition to streamlining data collection.

Uses mobile technologies to provide health support to persons with Albinisms or technical support to Dermatology, Ophthalmology, and Mental health Service Provider and in Data collection, meaning m-Health-based interventions is cost-effective approach to increasing access to care in remote settings  among underrepresented Persons with Albinism populations. 

To this end, E-Ubuzima open source Platform will introduce a tele-consultation approach to reduce cancer health disparities and improve cancer outcomes for people with albinism. sophisticated cameras built to the lower-end smartphones will enabled the acquisition of high-quality digital images of gross anatomy that can conceivably be used as part of a cancer screening program.

This E- Ubuzima  is particularly exciting platform because it will address the often-late presentation of skin cancers in a stigmatized group experiencing sociocultural and economic disparities.

also E- Ubuzima  will provide guidance to service Providers for  follow-up of suspected Skin Cancer Patients for referral Purposes, for further diagnostic Premalignant, lesions and biopsy services.

The Target Populations are Persons with albinism and  Albinism is a relatively rare, non-contagious, genetically inherited condition that affects people regardless of race, ethnicity or gender. The condition is characterized by a significant deficit in the production of melanin, which results in the partial or complete absence of pigment in any part or all of the skin, hair, and eyes. albinos are considered disabled which made them Vulnerable because their vision problems are very severe. Direct sunlight can cause pain, blisters, even skin cancer in albinos. most people with albinism come from rural areas and cannot afford to buy a bottle of this lotion and other health services.

Albinism often results in two congenital and permanent health conditions: visual impairment to varying degrees and high vulnerability to skin damage from ultraviolet rays, including skin cancer. Though people with albinism represent a relatively small segment of the population in Rwanda, they are disproportionately affected by poverty, particularly in African countries and least developed countries. Moreover, they face multiple and intersecting forms of discrimination on the grounds of disability and color, and are often excluded from public policies in the key areas of health and education. Women and girls with albinism face unique and compounded discrimination on the basis of gender.

Albinism is a rare, non-contagious, genetically inherited condition which occurs worldwide regardless of ethnicity or gender. It most commonly results in the lack of melanin pigment in the hair, skin and eyes (oculocutaneous albinism), causing vulnerability to sun exposure. This can lead to skin cancer and severe visual impairment. 

this population is underserved because families, communities, government and society doesn't see Persons with Albinism as a human being."

  E-Ubuzima - will address healthcare gap to Persons with Albinism including vision impairment and their needs regarding preventive measures to address their vulnerability to skin cancer and provide safe environment for Persons with to the full enjoyment of their rights to health, education, and work, as well challenges in accessing social services, particularly health-related social services.

The expectations is that this Open source Platform will facilitate much-needed
research, data collection, and discussion on issues affecting people with
albinism so that progress may be made in the respect, protection, and
fulfilment of their human rights.

Our team is comprised of a diverse and complementary group of experts in Dermatology, Ophthalmology, public health, Mental health, health informatics, and human-centered design that provides expert viewpoints from a wide array of fields. Our Rwandan leadership has expertise in rural health needs and national health requirements, while our Executive Director’s extensive experience in electronic health records.  which allows our team to draw upon the successes and failures of digital health records. The Health Alert Organization works closely in Partnership with the Rwanda Ministry of Health to guide or national scale strategy.

Also our team is has adapted safeguarding policy and inclusion policy where our Mobilization Coordinator is a person with Albinism who engaged other beneficiaries  in platform design and implementation of this solution meaningfully guided by beneficiaries inputs and ideas.

Applying to solve for the Support to customizable, open source mobile platform that supports frontline workers in low-resource communities. 

The mobile applications can be used as case management tool for tracking beneficiaries through a lifecycle of health services, in addition to streamlining data collection by addressing healthcare gaps for Persons with Albinism including vision impairment and their needs regarding preventive measures to address their vulnerability to skin cancer.

The problems, we are trying to address have been left behind and no single solutions have been successfully implemented.

Our solutions are to maintain contact and direct communication with Vulnerable People with Albinism, communities and their leaders by use of digital platform, while do Health education on Cause of Albinism, Preventive Measures, Use of Creams and on beliefs and power relationship within communities that inhibit any efforts to address the issue for more than centuries and it is digital data collection tool. 

We will reach the communities by providing health education to Albinism Condition that could be easily to be understood, making the community and Families to gradually  understand the cause of Albinism. The need for human rights practices and access to healthcare and basic preventive measures to  protect them from preventable Skin cancer and Mental Health, and to understand that local healthcare system will provide benefits to them. Through the children, we will also rebuild trust from dominant community leaders to the healthcare system.

We would like to have more health education materials on Mental health and Trauma facilitating big number of Mother of  children with Albinism and People with Albinism to Cope with Mental illness due to descrimination, I solation, stigma and other dehumanized practices by Family, Community and Education sectors.

For the next five years, we would like to create trainings for the Focal Point Nurses at Health Centers and Clinical Officer at District Hospital on how to treat Person with Albinism and on Use of E-Ubuzima data driven Application and Local Creams Formulation for better and easy creams Distribution.

Access the basic Mental health care education with in Community Clubs

The mobile applications can be used as case management tool for tracking beneficiaries through a lifecycle of services, in addition to streamlining data collection for future planning.

The level of access to Primary health care such as Dermatology and ophthalmology services and the number of registered Person's with Albinism into the System will determine the  progress to meet our goal.

 E-ubuzima will have accurate number of People with Albinism who attend the Albinism Clinics in the each District. while reducing Paper erro, with Accurate data on Visual, Skin Cancer, Prevention measure, and  Creams Impact by comparing data of one in Person for  today and Previous data.

Percentage of PWA Accessing protective gears from Sun exposure  and get better treatment to children, women and Men with Albinism Countrywide.

program Accessibility, affordability and attainable by all People with Albinism and will be measured by number of People with Albinism whom adhered to the service with full of information, and facilitated to access tertiary health care services. 

Bringing pictorial story on health practices of People with Albinism, and access to healthcare including Ophthalmology, and Dermatology services, which will change the mindset of children, Youth and older age with Albinism to their current life Condition and motivate them to influence the mindset of mother and family members and the community on Albinism Health care. This will then create a demand for improving the quality of life of People with Albinism  and Stigma reduction.

Mobile health (E-ubuzima or m-health) can help to bridge some of the gaps in detection and treatment of skin cancers affecting Vulnerable Persons with Albinism due to Sun exposure.

We seek guidance on the use of Health Mobile Application  for keeping contact and direct communication with Vulnerable People with Albinism, communities and their leaders, while do Health education on Cause of Albinism, Preventive Measures, Use of Creams and other health benefits on beliefs and power relationship within communities that inhibit any efforts to address the issue for more than centuries.

No discrimination  against the basis of race, color, sex, sexual orientation, gender identity, religion, disability, age, genetic information, veteran status, ancestry, or national or ethnic origin. we work under Disability inclusion Policy and we encourage Diversity leadership working environment where our Mobilization coordinator is the Person with Albinism.

E-Ubuzima digital health record will be made available through an Open Source software,  The E-ubuzima Project, Health Alert Organization expert-user Dermatology and ophthalmology  from Health Centers nurses and District Hospitals Clinical officers, Health Alert Organization will continue to maintain the software and implementation strategies. We provide services to the Persons with Albinism for free, and on Quarterly basis.

We do not have any example to show worth exception to the private donations and small grants from Segal Family Foundation and King Baudouin Foundation to support Health Alert Organization programs in several districts.

Through Collaborations and Partnership will make Organization to secure some Money, because of shared Resources.

As Mentioned above, We have secured some donations and small grant from Segal Family Foundation and King Baudouin Foundation to support Health Alert Organization programs in several districts.

Segal Family Foundation has provided $10,000

 King Baudouin Foundation has donated $ 8,000

Beyond Sun Care has donated 3200 bottles of creams which has value of $ 26,000.

 Collaborations and Partnership agreements has Contributed a lot, because of shared Resources and will sign More Collaborations/Partnerships in Future.