Care 4 them : Merging in Person care & Mobile-care

The Specific problem we are trying to solve is to Provide access to sustainable healthcare for  People with Albinos rare condition in Rwanda. In many African countries including Rwanda due to stigma and discrimination against persons with albinism  and a shortage of qualified health workers including Dermatologist, Ophthalmologist and Psychologists, persons with albinism encounter difficulty in accessing healthcare services including Skin care, Eye care, Mental healthcare and  Preventive Sun screen Creams.

Albinism is a rare genetic condition caused by mutations of certain genes that affect the amount of melanin your body produces. Melanin controls the pigmentation (color) of your skin, eyes and hair. People with albinism have extremely pale skin, eyes and hair. They are at an increased risk of vision, skin and social issues.

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

In Africa. 200,000 People with Albinism lack access to primary healthcare services due to inadequate Skin care, Eye care, Mental healthcare, Preventive Sun screen Creams and a shortage of qualified health workers including Dermatologist, Ophthalmologist and Psychologists.

Due to the reduction or absence of melanin, albinos are highly susceptible to the harmful effects of Climate Change (ultraviolet radiations) and are at increased risk of actinic damage by Tropical Sun and therefore skin cancer with a lack to access Sun Protective Factors (sun Screen creams) in Africa including Rwanda.

In sub-Saharan Africa people with albinos rare condition with no education or access to the protection from the sun that they need. In addition to being discriminated against for their appearance and persecuted by the influence of violent superstitions, the main cause of their extreme vulnerability is the sun: skin cancer ends the life of 9 out of 10 people with albinism before reaching the age of 30

Quarterly Screening is an important step in the detection of skin precancerous and Vision defects. screening started 2016 in Rwanda about six years ago and currently, there are established public health programs screening Albinos for various skin and eye conditions in Rwanda. The early identification enables prompt management thereby preventing severe Skin cancer complications and premature death. Despite the obvious advantages of Skin precancerous and Vision screening, it is not widely adopted, (in fact, it is absent) in many East African countries. This constitutes a lost opportunity to improve health care.

In Rwanda, 3000 People with Albinos rare condition registered who suffer from preventable and treatable Skin Cancer, Vision defects, Mental conditions and effects of Climate Change causing a high mortality rate for this Albinos rare condition Population. Accurate diagnosis of Skin cancer, Vision defects, Mental disorder and provision of Sun Screen Creams is the next crucial step in patient management

Care 4 them : Merging in Person care & Mobile-care to solve a shortage of qualified health workers through mobile-health early Diagnosis for Prevention and Treatment for skin cancer in rural settings where you can't find  Dermatologist, Ophthalmologist and Psychologists,  -Our healthcare solution Provides access to preventive sun screen creams and connects beneficiaries to medical providers for Consultations, biopsy,  Plastic Surgery and Eye Surgery, diagnosis, referral, and treatment.

Our solution enables Access to health care either In person diagnosis or remote diagnosis of Albinos Skin Cancer for underserved communities in Rwanda and East Africa. This remote diagnosis and management support is based on the use of Telehealth. This solution is based on the belief that accurate diagnosis of skin cancer in underserved communities can be achieved effectively and cheaply using In person diagnosis and Telehealth capabilities. Our solution will deploy facial recognition of Mobile Application and compare captured images and clinical information to existing databases. 

The solution will provide the most likely diagnosis and offer best line of management. All these will be done without the need for costly travel to urban centers for clinical diagnosis and will help to overcome the deficit of clinical dermatologists in east African countries. For example, Rwanda with a population of about 13 million people have 5 Clinical Dermatologists. Training of all participating health workers will be done using specially developed teaching tools including identification of signs suggesting the presence of a skin cancer symptoms'. After each delivery, where a Albinos skin cancer is suspected, the nurse/health worker will take clinical photographs – after securing informed consent from the parents – using the facial recognition mobile application. The images will be uploaded into a secure cloud server  for remote review by the mobile application. 

Improving the life of most Vulnerable people with albinos rare condition through a holistic approach model. Our objective is to prevent skin cancer and promote the social inclusion of people with albinism in Rwanda and East Africa.

With Idea of Establishing Local Creams Production Unit to mitigate the increased risk of actinic damage by Tropical Sun and therefore skin cancer by Alleviating the burden of sun screen creams high costs and Medical bills on Family of a rare disease Patient. 

Core to our mission is to save Patients lives through health equity, advocacy, psychological consultation, treatment and early screening of skin precancerous lesions and vision defects by providing sustainable healthcare services to Albinos.

HAO now is serving  700 People with Albinos rare condition from Rwanda and 150 People with Albinos rare condition looking for our service Crossing boarders  from Burundi, DRC, and Uganda who suffer from preventable and treatable Skin Cancer, Vision defects, Mental conditions and effects of Climate Change causing a high mortality rate for this Albinos rare condition Population.

Also, HAO provides access to healthcare services to 43 Persons with Albinos rare conditions in Refugees Camps in Rwanda.

Our Solution Serve People with Albinos genetic rare Condition, "Albinism" in humans is a hereditary disorder characterized by the complete or partial absence of melanin in the skin, hair and eyes.

Most people with albinism (PWA) are sensitive to sun exposure; and hence, they are at increased risk of developing skin cancer, as well as other skin conditions associated with sun exposure such as Actinic keratosis, lentigines, solar elastosis, actinic cheilitis and sunburn. Albinism is associated with a number of visual defects, such as photophobia, Nystagmus, strabismus myopia, presbyopia and poor vision. 

Albinism is a genetic disorder, and there is currently no cure. Their  Special need primarily focuses on getting proper eye care, skin care, Sun Protective factors, integrating them in the society through fight against stigmatization,  discrimination and promoting social inclusion in healthcare and Education as human right. Their Primary need is to have People who understands their conditions and care for them.

More often PWAs are discriminated against in the society due to the color of their skin. In addition to that, PWA faces inaccessibility to health care services. Also the general community lacks proper information and scientific understanding of albinism condition; and thus leading to myths, misconceptions and prejudices; fueling discrimination, stigma, marginalization and social exclusion of PWA in the society. 

The purpose of this Solution is to assess how PWA in Rwanda and East Africa - access health care services and the problems they meet in getting health care for us to carry out advocacy to the concerned health authorities. The solution will increase the knowledge and skills of the health care workers at the rural health care facilities and asses knowledge of Primary health care workers has on albinos and albino health care.

Worldwide, it is estimated that about 1 in 17,000 people has some form of albinism; but in Africa an estimation of 1 in every 5,000 to 15,000 people have albinism, with selected populations having estimates as high as 1 in 1,000. 

In sub-Saharan Africa, about 200,000 PWA have no access to the sun protection materials. In addition to being discriminated against due to their appearance and persecuted by the influence of violent superstitions, the sun remains the main enemy of PWA. And thus skin cancers associated with sun exposure end the life of 9 out of 10 PWA before they reach the age of 30. 

In Rwanda, 3000 People with Albinos rare condition registered who suffer from preventable and treatable Skin Cancer, Vision defects, Mental conditions and effects of Climate Change causing a high mortality rate for this Albinos rare condition Population

Our Solution involves People With Albinos rare condition in the design and implementation of healthcare services their need most and when they need it. PWAs and their close relatives are given health education concerning albinism and how they can prevent skin cancers and other skin conditions related to sun exposure. PWA also provided with mental health care services and their relatives including mothers of children with Albino rare condition. Those who suspected with skin cancers, visual defects and severe psychological disorders who may need medication; they supported to get transferred to the specialized referral hospitals for appropriate care.

The team is made of Rwandan resident in Rwanda. The Team Lead is a physician involved in management of Albinos skin cancer and Vision Defects. This afforded a first hand experience of the operational environment and circumstances. The other members of the team also live and work in the target communities, thus the entire team have a close connection with the beneficiary population.  My team including dermatologists, ophthalmologists, Psychologists, Pharmacists, Public health, IT, Accountants and Medical nurses with experience ranging from 10 Years in the healthcare services with a passion to save lives. This makes us the right team to design and deliver this solution to the target population for the future sustainability.

 we have a close engagement with Beneficiaries since 2017 -2023, where our team has Albinos Pharmacist and in the board of directors, we have a female with Albinos Condition, these two People helps us to design services depending on beneficiaries needs. we have a close collaboration with Rwanda Ministry of health(MOH), Rwanda Biomedical center( RBC), Rwanda Albinism Network, Albinism associations and Albinism Community Clubs who are engaged in the development and design with implementation of this solution meaningfully guided by their ’ input, ideas, and agendas. Together we put our beneficiaries at the center of our work.

We have Financial investment and Technology investment barriers to locally establish the Medical sun screen creams Production Unit in the healthcare space in Rwanda, East Africa community and beyond.

The Prize will help us to Launch local sunscreen cream production that will enhance the access to sunscreen creams for People with albinos rare condition and has the potential in prevention of Skin cancer for persons with albinos rare condition to alleviate burdens of environmental factors affecting Albinos health and reduce the High cost of Sun Protection factors creams to Albinos rare condition families.

This Prize will overcome Financial barriers, which will  be invested in buying Machines and other technological equipment's of the local production Unit, and would assist in achieving affordability and availability of the creams in the country and create jobs for vulnerable People with Albinism.

The prize will also, overcome Technology barriers that will be used to design and develop Mobile health Application that will expand and reach more beneficiaries in Rwanda, Easter Africa and Region. this Prize will help Health Alert organization mobile health technology hub and  grow to Social enterprise organization.

The Team Lead is a physician involved in management of Albinos skin cancer and Vision Defects. This afforded a first hand experience of the operational environment and circumstances. The team lead also live and work in the target communities, thus the team lead has a close connection with the beneficiary population and communities where project is based.

1. Access to healthcare for Albinos population including Sun protective factors(SPF50+), Skin cancer and Eye defect screening is absent in many African countries including Rwanda, we are challenging the status quo. An offshoot of this solution is the establishment of albinos healthcare program within existing primary healthcare. 

2. Our innovative approach is looking for the problems as possibilities. This is the key to our innovation problem solving. 

        3. This solution deploys a facial recognition of mobile health  powered by Mobile Application to identify rare cases of Albinos in rural settings. This may help patient to access healthcare in Rwanda, especially in addressing obvious lack of skilled dermatologist, ophthalmologist and Clinical Psychologist. The technology will help to overcome the deficit of clinical dermatologists in Rwanda and beyond. 

4.  Health insurance coverage is helpful in Rwanda. We aim to ensure the sustainability of our solution through Albinos healthcare inclusion in primary healthcare services through training primary healthcare workers or healthcare providers on Albinos condition and Albinos healthcare and integrate Albinos healthcare services into health insurance plans in partnership with Government of Rwanda through Ministry of Health.

5. information on Albinos rare condition will be available for parents and care givers and  will be updated regularly based on feedback from the target group to broaden the information database. Telehealth consultations will be done to facilitate adequate counseling for parents.

1. Enhancing equitable Access to healthcare for People with Albinos genetic condition and the accuracy of diagnosis, management and prognosis of Skin cancer in Rwanda and East Africa among Albinos population.

Apart from using mobile health to make diagnosis based on the wide array of available medical information, we will operate a feedback system on the subsequent clinical outcome of each index case in order to improve the performance of the mobile application.

Speedy diagnosis and management  will enable immediate commencement of Skin cancer management using available resources before subsequent transfer to more specialized referral Hospitals. This hopefully will improve the prognosis of the skin cancer cases.

2. Provide clinical data on Skin cancer and eye defects to the Rwanda Biomedical Center and Ministry of health on the Albinism skin cancer related to Albinos rare condition among Rwandan.

Inadequate clinical data collection and publication is the bane of accurate diagnosis of Albinism Skin cancer and Vision defects arising in Rwanda and beyond. We intend to improve the situation via the evidence documentation and compilation of the clinical data on Albinism Skin Cancer in Rwanda. This solution will also enable a comprehensive data collection by incorporating nearly all players involved in healthcare delivery (especially dermatologists, ophthalmologists, Psychologists, Oncologists, community Primary healthcare workers operating under-served communities. The publication of these data will increase the worldwide knowledge base of these conditions.

3. Improve the management of Suspected Skin cancer Albinos in under-served communities in Rwanda and beyond.

Speedy diagnosis and recommendations of medical management by the mobile health Application, achieved via Mobile health capabilities has the potential to reduce skin cancer death among Albinos and improve survival of Albinos. 

4. Establish a healthcare services in rural health centers in under-served communities in Rwanda using existing healthcare infrastructure and services. 

A default offshoot of this solution is the establishment of Skin and  eye, screening program in under-served communities. Since this is achieved through existing healthcare infrastructure it will serve as a template for the establishment more formal mobile healthcare screening programs 

5. Provide responsible and adequate counseling to mothers of children with Albinos rare condition to alleviate their anxiety and stress.

Anxiety, emotional stress and trauma of mothers of children with Albinos condition is an overlooked distressing situation. The situation becomes more distressful in the absence of adequate Phycological services. The solution will use mobile health to provide counseling services to relieve the anxiety of patient relations.

6. Deepen the coverage of mobile health facilities in under-served communities in Rwanda and Beyond.

Even though various forms of mobile health offerings exists currently, incorporating the technology into this solution will help to deepen the reach and acceptability of the technology in Rwanda.

7. Maintain sustainability of this solution through adaptation into health insurance plans and Capacitate Primary healthcare workers and healthcare providers

Adapting the solution into existing health insurance and partnering with government agencies providing health insurance will ensure sustainability of the solution and prevent expensive out-of-pocket fees that could discourage maximal benefits of the solution.

1. Number of healthcare providers trained on Albino condition and Albinism health care in under-served communities who will be part of the program on daily basis.

2. Number of families who consent to be part of the program.

3. Number of cases of Albino skin cancer and Vision analyzed by the solution annually including the accuracy of diagnosis and the outcomes of the cases.

4. Feedback by parents or caregivers on the adequacy and usefulness of the  Sun protective factors materials including Sun screen creams (SPF50+), wide brimmed hats, Long sleeve shirts in preventing Skin cancer, Sun glasses, optical collective glasses, leading glasses and Photochromic glasses.

5. Feedback from Primary healthcare workers on the Albinos information made available through the solution.

6. Documentation of Clinical data collected and Reports.

7. Number of health care clinics conducted and number of beneficiaries reached by the solution.

our theory of change falls on the following self questions

1. What is the problem you are trying to solve?

Enhancing equitable access to healthcare for People with Albinos genetic rare condition  with Accurate diagnosis of Skin cancer and Vision defects is inadequate in Rwanda constituting a lost opportunity to improve health care and reduce healthcare Inequity.

Establishing sustainable access to healthcare services for Albinos rare condition for accurate Skin care, eye care, Clinical psychology diagnosis will solve data unavailability – Skin cancer data – among Albinism Population in Rwanda and beyond.

2.Who is your key audience?

 People with Albinos rare condition mostly children and mothers of children with Albinism who have hardships to access healthcare services in there communities especially in under-served communities of Rwanda and East Africa.  

3. What is your entry point to reaching your audience?

Community entry will be done through Albinism Association, local authorities, community health workers and health centers and district hospitals and other social groups. The community entry will also be done in partnership with the Ministry of health to integrate our services into existing healthcare.

4.What steps are needed to bring about change?

Appropriately designed healthcare services will be established at district hospitals and health centers, and other social events. Individual health workers will be invited to participate in the program. Participating healthcare workers will be trained on Albino rare condition and Albino healthcare and align the with the solution. 

5. What are the wider benefits of your work?

The community will have access to modern healthcare solutions.

There will be up to date training resources and tools for all participating health workers including dermatology officers or doctors, ophthalmology, Clinical Psychology, nurses, and other allied health personnel. Accurate diagnosis of skin cancer and Vision defects in under-served communities, along with suggested management for the patients.

6. What is the long- term change you see as your goal?

It would be possible to provide accurate diagnosis for skin cancer and Vision defects in under-served communities. This will lead to improvement in management of cases.

Availability of an effective alternative to the  inadequate of clinical geneticists in Rwanda and East Africa.   

The core technologies includes:

1. Recognition of Mobile healthcare Application. This Application will scan images of patients and compare the images to know images of patients with similar clinical manifestation to arrive at a likely diagnosis.

2. Mobile health Application that will account for known Albinos variations in Rwanda  and integrate the knowledge to index images to suggest best possible diagnosis. The same M-health will search available databases to provide management for the clinical data.

Number of Full -Time staffs : 10

number of part-time staffs : 3

Number contractors : 2

Number of Volunteer staffs: 4 

 I and my team we have been working on the solution in more than 7 years and among the team we have dermatologists who have 15 years of experience in clinical part of the solution.

Health Alert Organization (HAO) is Non governmental organization with registration Number 344/NGO/RGB/LP/08/2018 in Rwanda Governance Board. Founded Since October 2016 and have been working on this solution since 2017.

Core to our Mission : works with partners worldwide to improve health and health equity through research, advocacy, prevention and screening of NCDs including albinos Skin cancer

Our Approach to maintain diversity, equity and inclusion is to fight discrimination against the basis of race, color, sex, sexual orientation, gender identity, religion, disability, age, genetic information, and  ethnic origin through safeguarding policies.

Enhancing equitable access to healthcare for Albinos rare condition including Sun protective factors( SPF50+), wide brimmed hats, Sun glasses, leading glasses, Photochromic glasses and collational glasses to Albino health care is a model model aimed at equipping family members of Skin cancer patient with the right healthcare services they need most including Skin care, eye care, and psychological care  to enable their affected family members have an opportunity to experience improved health and well-being. We have integrate Albinos healthcare services into existing primary healthcare to enable each beneficiary access to healthcare and sun preventive materials  . This facilitates increased access to Sun screen creams on low costs at time they need it from near health center in the community.

In partnering with Ministry of  health  to incorporate our solution into existing health services, we aim to achieve solution sustainability. The mutual insurance pays for the services rendered to our beneficiaries. This alleviates the burden  of high costs on services to People who can't afford healthcare bills, especially those who lives in under-served communities.

Establishing Local Sun screen cream Production with aim of selling these products (creams) to the government under contract through Ministry of health as medical creams for People with Albinism in Rwanda.

The aim of this local production is to generate income and employing people with albinism. One of the main objectives is to promote the establishment of local manufacturing sunscreen Unit in order to be economically sustainable as social enterprise.

The income generated from established Unit Production will be used to fund organization operating budget and development projects and activities to meet organization mandate. Our objective is to cover the running costs of the Organization work and HAO to be independently financial stable.

This Established Social enterprises will play a crucial role in local communities by creating new opportunities in terms of employment, income growth, enhanced provision of services, increase in local income retention and engaging the community in development programs.

We have established long term partnerships with Foundations and Funders and other key players with a shared vision as we look out for more grant support to finance our programs as we are a non-profit (NGO).

The following Foundation in Partnership 

1. Segal Family Foundation with funding commitment of $ 60,000 Per year within 8 years period.

2. New Africa Fund with funding commitment of $ 50,000 to establish local cream production 

3. Beyond Sun Care with funding commitment of $ 25,000