Orphans in the Desert is an online platform that aims to help people with rare diseases by allowing them to input unstructured health data to be analyzed by IBM's Watson for potential diagnoses, and to cluster patients together in order to incentivize treatment research. It serves as a safe place for rare disease patients to describe their symptoms freely without bias or preconceptions, and provides educational resources, support groups, and information on clinical studies. The platform allows for both individual analysis of user data as well as macro-level statistical analysis of particular or general rare diseases.

1. Welcome to
Orphans in the Desert

2. GigHacks Objectives
1. Impact
The FDA estimates there are 7,000 orphan diseases (condition affecting less
than 200,000 people). There are few small efforts to diagnose these
conditions and the estimated number of people affected is unreliable. The
NIH at the Office of Rare Diseases Research department and the
Undiagnosed Diseases Program (UDP) have conducted some studies. Very
few of these studies have resulted in conclusive treatment. Pharmaceutical
companies do not have an economic incentive to develop drugs for the
relatively small number of people affected per disease.
Most people with these conditions spend years in the pursue of diagnosis
and treatment to improve their quality of life. Most have been dismissed by
health care practitioners, government, insurance companies, and
pharmaceuticals. The economical, social and emotional cost of this pursuit
cannot be measured.

3. GigHacks Objectives
1. Impact
Orphans in the Desert is an attempt to cluster sufferers of distinct rare
diseases into groups large enough and with a sufficiently well-defined
set of symptoms and markers to allow for pharmaceutical companies to
develop drugs and for health care providers to develop protocols for
treatment. At the same time it aims to help those struggling to
recognize the scope of their symptoms and provides a guide to the
possibilities for diagnosis of their disease and relief of their symptoms.

4. GigHacks Objectives
2. Innovation
Innovation is not only measured on new takes on bright ideas but in how these
ideas can be experienced by a larger and usually underserved group of people.
Our approach to gathering information in free format, anyway the user wants to
use it allows for more data gathering. The algorithms in the back end of the
software are responsible for giving the data structure and IBM’s Watson is
responsible for the analytics.
Orphans in the Desert is capitalizing on two innovative concepts. One
is the ability to offer always-on connectivity especially for those with
limited or no internet service. The other is by allowing any type of
unstructured data to be fed into an structured software to analyze and
then offer solutions that can be life changing. Not only can we help
people with these conditions but also we can provide critical
information for health care providers, government agencies, and
pharmaceutical companies.

5. GigHacks Objectives
3. Story
Most people suffering from a rare disease spend years without proper diagnose
and treatment if they ever get one. There is little incentive, resources and
interest in the development of programs gear towards the prompt diagnosis and
treatments. In most cases these conditions lead to very poor quality of life and
sufferers give up on the hope of finding treatment because they feel betrayed by
the medical community, government and pharmaceuticals who dismissed their
symptoms.
Orphans in the Desert is a place designed primarily for people with a
rare disease. It offers a safe place for them to describe their symptoms
in their own way, unbiased and without preconceptions. It also serves
as a tool to further the diagnoses and care of these conditions.

6. The Traditional Approach of Diagnosis of Rare Diseases
Symptom 1
Symptom 3
Symptom 4
Symptom 5
Symptom 6
Symptom 7
Symptom 2
Symptom 8
Doctor Evaluation based on
recognized conditions
Patient
Doctor Diagnosis

7. Orphans in the Desert Approach of Diagnosis of Rare Diseases
Symptom 1
Doctor’s note
Symptom 2
Blood Test Results
Symptom 6
Symptom 8
MRI file
Symptom 3
RX
Symptom 4
Symptom 7
Video
Symptom 5
Patient Input
Symptom 1
Symptom 3
Symptom 4
Symptom 5
Symptom 6
Symptom 7
Symptom 2
Symptom 8
Patient Watson Analysis
Neurological
Symptom 6
Video
Skeletal
RX
Skin
Symptom 3
Cranio-cervical
MRI File
HEENT
Symptom2
Respiratory
Symptom 1
GI
Symptom 5
GU
Symptom 8
Muscular
Symptom 4
Symptom 7
Suggested Rare Disease
Health Care Providers
Educational Material
Local Resources
Support Groups
Clinical Studies

8. Orphans in the Desert Input of Data
The way data is input in Orphans in the Desert is designed to achieve the
following:
1.Unbiased data. The software does not care (for the most part) of gender,
ethnicity, social status, economical status, and educational level.
2.Unstructured data. The user will input any format of data for example
scanned notes, pictures, Rx, videos, MRI images, blood results, etc.
3.Customized questions according to symptoms. Once the user adds a
symptom the program will prompt a follow up details of the particular
symptoms. This will help Watson to learn about the user, select possible
conditions; and it will enable the user to analyze further their own symptoms
to have a better understanding and seek treatment.
4.The system serves as an organization tool and progression of symptoms
displayed by categories to take to their health care professionals.
5.The system is designed for someone who just started the journey of
discovery or for those more educated about their condition already. This also
allows for Watson to learn from users and help others less informed.
6.The information gathered can be analyzed at a micro scenario with each
user or a macro with statistic of particular or general diseases.

9. Illustration of Data Input
User
Software
Allergies
Food
Environmental
Chemical
Barometrical
Chemical
Barometrical
Rash
Vertigo
Low Blood Pressure
Vomit
Dizziness
Patchiness
Patchiness
Suggested Conditions
1.Mastocystosis
2.Mast Cell Activation Disorder
Analysis