Rare

Amr fawny Lab 

Its non profit organization to develop new health solutions and extensive research and clinical trials in the following field 

1- Medicine  

2- Space physics  ( 11 research addressing particle X speed and another 10 universe dimensions 

3- new clean energy solutions research 

4- rare & orphan diseases grading  textbook of 9 volumes 

researchgate.net/profile/Amr-Fawzy-4 

amazon.com/author/amrfawzy

Rare diseases are the types of diseases with low incidence and mostly genetics, they affect 5% of the world’s population. Up to 80% of rare diseases are genetic in origin. Additionally, nearly 50% of all rare disease patients are children. 

Our solution is to facilitate the deep knowledge of 7000 rare diseases for consumer and medical professionals 

to create community all over the worlds to communicate sharing their experiences and best practice 

to enroll best treatment and engage charity organization inside and within the application to help patient 

using Fawzy grading for rare diseases  to evaluate the grade of the diseases and its prognosis 

if we have a simple classification 

• Genetics, metabolic 
• Rare infection diseases 

Over 7,000 rare diseases affect more than 30 million people in the United States. Many rare conditions are life-threatening and most do not have treatments. Drug, biological, and device development in rare diseases is challenging for many reasons, including the complex biology and the lack of understanding of the natural history of many rare diseases. The inherently small population of patients with a rare disease can also make conducting clinical trials difficult. Since the Orphan Drug Act was signed into law in 1983, the FDA has approved hundreds of drugs for rare diseases, but most rare diseases do not have FDA-approved treatments.  The FDA works with many people and groups, such as patients, caregivers, and drug and device manufacturers, to support rare disease product development. 

the rare diseases which developed from rare infections like encephalitis viral infections and many zoonotic diseases which transmitted from animals by coincidence, actually this is the basic future challenges for humanity whatever the one infected and the one no infected like monkey pox, rift valley fever and the shifted and drifted new viral influenza, Virulent Ebola  

 the genetic limited diseases are various in severity and their effects on normal  affected human lifestyle  60% of genetic rare diseases have palliative treatment to keep the affected human life normal as much as we can 

and the rest have various effects starting from normal mobility, musculoskeletal functions, brain function, and metabolic functions, with different grades according to the degree of such diseases 

But actually, the Major risk is mainly in the infectious rare diseases as mutation and the abilities of viruses to change their third party vector for transmission which  can be a one-day fulminant Pandemic, 

The solution is to address a new manual to deal with both types of diseases category using many tools, starting from data localization and certain instructions guide the patient and community culture and  the holly way of management 

Our solution is to create and connect all partners dealing in more than 7000 rare diseases starting from patient , doctors , health organizations , charity organization , providing the following 

1- connect patient with same disease to share their best practice and to have inside message that you are not alone 

2- connect patient with professional doctors to consult them 

3- sharing most advanced treatment option with health care professional 

4- enable charity organizations to reach the patient which deserve the free treatment 

5- enable pharma companies to finds patients to run the final clinical trials for efficacy for their new treatment solutions 

6- using fawzy grading textbooks as data base to evaluate prognosis , diagnosis of 7000 diseases 

the solution will create great impact on the life of patients , health care professionals , pharma companies and charity organizations 

 On the Level of patient 

• improve the psychology of patient when they find people with same disease conditions around world , they can share best practice , best methodology of treatment and advices with best treatment protocol 

 On the Level of  professional doctors 

• enable doctors to have the best networking between each others and in the same time its great to share best treatment practices between each others. 
• referral , enable doctors to refer patients to more specialized or rare specialized colleges. 
• continues learning program .

 On the Level of  pharma companies 

• easing the processes of selections of right candidates for third phase clinical trials for safety and efficacy. 
• easing charity job for free treatment and direct donation to the patients 

 On the Level of  charity organizations

• easing charity job for free treatment and direct donation to the patients 

actually the 9 volume textbooks ( fawzygrade of rare diseases grading 7000 diseases according to prognosis)  , cost of treatment and effect of the diseases on the life style of patient ) , we  extract the data of differential diagnosis by symptoms and laboratory findings , to be on the application 

we are in porotype phase to serve according to available  investment around 100,000 patient and  5000 doctors 

Gather all solution for patient with rare diseases under one umbrella 

to make this solution international and serve all Rare diseases patient among world from Alaska to Antarctica 

the design for implementation 

1- first application phase 

2- data collection phase through boosting application to let all patients register 

3- adding new provider for charity 

4- making the 4 manuals of the solutions printed and in Soft copy with QR code in every places, clubs , Airports , hospitals , schools , universities  ...etc

the goal for the first 5 years will be as follow 

1- first year upgrade the porotype with all application services and start to marketing the application using ATL , BTL marketing to reach all the categories of application users ( patient , Doctors , Pharma companies and charity organization  

2- second year intensify the marketing and increase the users mass of application to reach 250,000 users 

3-  rest of 5 years to reach 2 million subscribers on the application and convert the concept from application to be the holey book application for rare diseases as you can finds what you need under the umbrella of such application 

the solution will have great impact on such problem through the following 

1- improving the psychology of the patient through intercommunications between each others

2- increase clinical success rate through directing the best medications to the right patient 

3-  increase knowledge and awareness  about rare diseases in general and specific for patient through the consumer portal 

3 peoples 

Amr fawzy 

2 developers 

3 years from idea to porotype 

Actually as we have limited financing and face un closed deals with German partner with start to make the project with our available resources and capabilities and the only benefit is the humanity good will of helping people with rare diseases 

The value is in two words 

cut the time 

cut the cost 

the full integration between 5 arms for genetic rare diseases and two arms of rare infectious diseases 

which will add value through benefits and data exchange and even social compassion and mind relief of patient when he finds himself not alone, there are many people like him 

the subscription fees of professional doctors against professional services and subscription fees from patient after one year of launch