E-Ubuzima

Albinism health care

In human beings the type and amount of melanin the body produces determines the color of the skin, hair and eyes in human being. "Albinism" in humans is a congenital disorder characterized by the complete or partial absence of melanin in the skin, hair and eyes. Most people with albinism are sensitive to sun exposure and are at increased risk of developing skin cancer. Albinism is associated with a number of vision defects, such as photophobia, nystagmus, and amblyopia, thus Mental health/trauma.

People with albinism face multiple forms of discrimination worldwide including Rwanda. Albinism is still profoundly misunderstood, socially and medically. The physical appearance of persons with albinism is often the object of erroneous beliefs and myths influenced by superstition, which foster their marginalization and social exclusion which dehumanize Persons with Albinism. This leads to various forms of stigma, Severe I solation and discrimination.

Although there's no cure for albinism, people with the disorder can be helped to take steps to protect their skin and maximize their vision.

Worldwide, it is estimated that about one in every 17OO0 people has some form of albinism; but in Africa an estimation of one in every 5000 to 15000 people have albinism with selected populations having estimates as high as one in 1,000.

In Rwanda less is known about albinism, but we believe "persons with albinism" (PWA) are there and many; for example, in 6 Districts out of 30 Districts supported by Health Alert organization, they are about 1380 PWA (Kirehe, Musanze, Rutsiro and 3 districts of Kigali City. And they are facing various health problems like other People in Africa and should be supported.

E-Ubuzima Solution

 People with albinism experience socio-cultural and economic disparities. Because of stigma related to albinism, they present to hospitals with advanced disease, including skin cancers. Mobile health (Mhealth) can help to bridge some of the gaps in detection and treatment of skin cancers affecting this population due to Sun exposure.

Use of smartphone app to improve health care delivery services in Africa and Rwanda. It is very important that mobile app like E-Ubuzima  be explored to reduce diagnostic delay and improve the accuracy of detection of skin cancer, Visual examinations, Mental disorders/Trauma screening and Provision of preventive gears especially in stigmatized persons with Albinism. 

 Giving Dermatology, ophthalmology and Mental health officers tools they need to adopt evidence-based clinical care protocols, provide high quality care and utilize real-time data trends to both tailor health education to individual family needs and to improve the health care delivery system while simultaneously satisfying Rwanda Ministry of Health data reporting requirements and increase the speed with accuracy of data collection, service delivery effectiveness, program staff performance, and Beneficiaries registration as well, that inform us real number of Persons with Albinism in Rwanda as not yet know.

Features of mobile data collection, such as decision support, form logic, and checklists, improve the quality of the data collected, while also ensuring adherence to data collection and care protocols while improving the quality of life of Marginalized Persons with Albinism. E-Ubuzima data collected will inform decision makers and Planners especially Ministry of health about health rights of Persons with Albinism whom their condition misunderstood because no Dermatology services at Health centers and District hospitals that facilitate Albinos healthcare, through technology and machine learning will be the right Solution to the challenge.

Our solution Target Population are Persons with Albinism. 

Albinism is a genetic condition caused by a complete lack of, or reduction in, melanin production which determines the color of the skin, hair and eyes in human being.  Most people with albinism are sensitive to sun exposure and are at increased risk of developing skin cancer and Mental disorder. Albinism is associated with a number of vision defects, such as photophobia, nystagmus, and amblyopia.

Although there's no cure for albinism, people with the disorder can be helped take steps to protect their skin and maximize their vision, our solution will serve more than 1380 People with Albinism in Rwanda and  Africa.

Mobile health app will improve health care delivery for Persons with Albinism. Mobile app like E-Ubuzima  discovered to reduce diagnostic delays and improve the accuracy of detection of skin cancer, Mental disorder and Visual examination especially in underserved stigmatized Persons with Albinism.

People with Albinism their currently underserved because their classified among  People with disability and they face barriers in accessing health care, human rights, education rights  services and they face forms of discrimination by family members and community.

Our team is comprised of a diverse and complementary group of experts in ophthalmology care, public health, dermatology, Mental health care  and human-centered design that provides expert view points from a wide array of fields. Our Rwandan leadership has expertise in rural health needs and national health requirements, while our Programs Director has  extensive experience as an end-user of electronic health records, this  allows our team to draw upon the successes and failures of based digital health records. The E-buzima Project works closely with the Rwanda Ministry of Health to guide or national scale strategy.

Applying to solve for the Support to customizable, open source mobile platform that supports frontline workers in low-resource communities. Frontline workers use E-ubuzima to track and support clients with Albinism, facilities, transactions, or anything else that needs to be followed over time. It is also a software tool which allows you to create, edit, and deploy mobile applications without a software developer. 

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

Our solutions are to maintain 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 on beliefs and power relationship within communities that inhibit any efforts to address the issue for more than centuries.  

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 disclination, 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

People with Albinism will access to basic health care such as Dermatology and ophthalmology services, with E-ubuzima will have accurate number of People with Albinism who attend the Albinism Clinics in the 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.

  Access to ways to protect from Sun exposure and get better treatment to children, women and Men with Albinism Countrywide.

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 grant 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.