THE RaDiPS HAMLET

As we continue to contribute to finding solutions to world’s pressing problems, we find the need to develop and deploy an AI-enabled tech-based solution known as the RaDiPS Hamlet – a one stop platform purposefully made for Rare Disease Patients and the Stakeholders to access healthcare with constant social engagement while ensuring that carbon footprint is reduced.

The motivation is due to the fact that genetic disease is the cause of exit of some of our world’s famous music legends such as Michael Jackson (Alpha 1-antitrypsin deficiency) and Celine Dion (Stiff-person syndrome), and others. The roadmap of the policy framework is geared toward:

1. Rare Disease Early Diagnosis Awareness Creation and Advocacy is Key: rare disease affect fewer than 200,000 people across a broad range of possible disorders and it is 80% genetic disease. The RD ratio cut across countries, for instance 1:2000 in Africa. Report shows that globally, there are about 7,000 rare diseases affecting people like world famous artists such as Michael Jackson (Alpha 1-antitrypsin deficiency) and Celine Dion (Stiff-person syndrome). To that effect if diagnosed early for treatment could be well managed.

2. RD Prevention through Lifestyle Choice and Changes: (i) few of RDs are preventable but many are not. (ii) During courtship, there is the need to go for blood-type testing before marring to avoid production of RD babies. (iii) Avoid the high risk of producing RD babies by ensuring you don’t marry blood relative. (iv) avoid incest-baby-making which poses a high risk of producing RD babies and will cause genetic abnormality in future. (v) Pregnant women must consume prescribed drugs only at right dosage during prenatal and antenatal stages. (vi) Avoid alcohol and tobacco (which includes passive smoking). (vii) Eat balanced diet while avoiding getting dehydrated in the cause of maintaining good lifestyle. (ix) Conduct regular checks and report on anomalies during pregnancy. (x) Protect yourself against infectious disease. (xi) With medical history of any chronic disease, try as much as possible to go for preconception care to avoid congenital anomalies. (xii) The pregnant woman can opt for genetic testing and counselling at the risk of producing RD baby. (xiii) Join the RD community and participate in clinical trials. (xiv) Share all relevant information on the RDP with RD specialist on the proposed Rare Disease Patients and Stakeholders platform (RaDiPS Hamlet).

3. Responses from Rare Disease Patients - Challenges confronting them and their Dependents (Parents or Caregivers): (i) Rare disease patients and their dependents normally suffer from discrimination and therefore extremely isolates themselves from society. (ii) The RDPs often live as undiagnosed patents. (iii) They face stigma of health professionals with doubt to hear the patient. (iv) RDPs and their caregivers or parents are faced with high cost of diagnosis and treatment. (v) When they are not being integrated in society and economies in order to fully live to realize their full potential. (vi) RDPs have difficulties in accessing the labour market and lack of getting active support for employment, likewise not having fair working condition. (vii) The RDPs face challenges of not getting timely access to health-and-social-care which includes education. (viii) The RDPs and their caregivers or parents are often not being inclusive and person-centered which kills their inspiration which often strive them to contribute to national growth and development as economies strives to adhere to the UNSDG – improving good-health and wellbeing; universal education; inequality; partnership; etc. (ix) Normally society infringes on their rights. (x) The RDPs management often faces challenges on data capturing and control by economies on the foresight study and policy framework that leads to their better future.

4. RDP Recovery: Notably, there is the need for rare disease people to get diagnosed as early as possible – as they cooperate in releasing of data to ensure their quality of full-life (long-life-span) without compromising their priorities in a sustainable way. To that effect, the following questions could be begging for sustainable solutions. (i) Why the RDPs prefer remote interaction with healthcare specialists? (ii) Why is there the need to facilitate knowledge-care-delivering through technology? 5. The Tech-Based Solution Touches On The Following Dimensions: (i) Make rare disease patients’ access rare disease healthcare with minimal efforts – thereby reducing their carbon footprint. (ii) Create RDH awareness campaign. (iii) Prevent escalation of the rare disease. (iv) Manage and control response from RDPs and all the relevant stakeholders. (v) Recovering from the RDs through early diagnosis and treatments. (vi) Extensively ensuring that carbon Footprint is reduced in the rare disease healthcare space through production of long-lifespan biomedical tools and equipment while sustainably recycling biomedical waste and (vii) Emphasizes the need to make biomedical products biodegradable without compromising the material sterility or safety as manufacturers replace unnecessary plastics of products.

Therefore, it is important to note that rare disease patient’s life matter – and that it is about TIME society elevate their voices or concerns.