expert corner
Lack of awareness about rare disease even
among doctor’s means that diagnosis can often
take many years. The cost of diagnosis and
treatment can also be prohibitively expensive.
Lack of awareness about rare
disease even among doctor’s
means that diagnosis can often
take many years. The cost of
diagnosis and treatment can also
be prohibitively expensive. In the
absence of a national government
policy surrounding rare disease,
there is no push for the
development of orphan drugs,
which can provide relief for
patients with rare disease.
GOALS OF ORDI
Represent the collective voice of all
stakeholders of rarediseases in India;
Form an united coalition.
Make rare diseases diagnosable and
treatable like commondiseases.
Enactment of ODA and Rare Disease
Policies at central andstate levels.
Connecting 70+ M patients with any
of 7000+ rare diseases inIndia with
Global initiatives.
Compassionate Use Programs Expanded Access Programs -Early
Access Programs - ATU - Named
Patient Programs.
Facilitate and encourage research
and orphan drug development
activities.
SOME OF THE ORDI INITIATIVES
India’s 1st Rare Diseases
Patients Helpline and Helpdesk
ORDI runs a national rare disease
hotline (+91 8892 555 000) to
provide information and advice to
patients with rare diseases
needing medical and non-medical
assistance. This dedicated
helpdesk goal is to enable patients
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BioVoiceNews | August 2016
have access to information and
resources to guide them through
the process of diagnosing and
dealing with the rare conditions
affecting their health and quality
of life.
Rare Disease Care
Coordination Center
Early diagnosis and intervention
is the key first step in tackling
rare disease. As the average
diagnosis time is 7 years, to
address this challenge ORDI has
designed an innovative program
called Rare Disease Care
Coordination Center (RDCCC)
which serves as a nation-wide
hub. This hub gathers patient
information, patient needs, and
then arranges for consultation
with rare disease experts at one of
their national-wide Centers of
Excellence (CoEs) which is a
multi-speciality hospital. These
CoEs are jointly staffed by ORDI
and hospital partner for patient
care. As of now we have three
hospital partners in South India
and two hospitals in North India.
We aim to have many more such
centers throughout India.
Race for 7 ( www.racefor7.com)
An awareness run held every year
on the last day of February on
Rare Disease Day to acknowledge
the 7000 rare diseases and to
spread awareness among the
general public. We are hoping to
have this marathon in more cities
in the coming years.
Continuing medical education
(CME) for doctors
ORDI has organized many CME
programs for doctors to help them
maintain competence and learn
about new and developing areas
of their field. These activities take
place across India and to sensitize
doctors about various rare
disease, their indications,
diagnosis, etc.
Continuous Patient Education
ORDI plans to conducts various
workshops educating rare disease
patients and their parents. The
mission of ORDI is to catalyze the
rapid development and delivery of
affordable diagnostics and
treatments for rare diseases
through innovative collaborations
and partnerships among
stakeholders to benefit rare
disease patients in India.
PRASANNA KUMAR B SHIROL
Prasanna Kumar B Shirol is the Co
Founder of Organisation for Rare
Diseases India also popularly known
as ORDI. He is also the President of
Pompe Foundation besides being
the Founder and Former President of
Lysosomal Storage Disorder Support
Society. He has worked extensively
to create awareness on LSD and
Rare disease in India. He has
represented India in various
conferences and meetings
internationally developed a strong
network of international Parent and
Rare disease groups.
Prasanna Kumar academically an
Post Graduate in Business
Management has over one and half
decade of sales experience in
telecom and consumer industry.