1. Organization for Rare Diseases India
Chennakeshava Nilaya, #10, 4th Main Rd, #2,
Ground Floor, Jaladarshini Layout, Parallel to
New BEL Rd, Bangalore-560054 Karnataka, India
Rare Disease Helpline: +91 8892 555 000
www.ordindia.org
contactus@ordindia.org
https://www.facebook.com/ordindia
Year End Summary of Activities of Organization for Rare Diseases India (ORDI) for 2014
Founded in Feb 2014, ORDI is a patient-centered non-profit organization with the mission to improve
health of patients with rare diseases around India through awareness, advocacy, collaborations and
information dissemination. ORDI represents the collective voice of all patients with rare diseases in India
to effect government policy making. ORDI has identified and taken on the grand challenges facing the
rare diseases community in India and is committed to systematically and holistically addressing those
challenges. Our approach is to engage with key opinion leaders and rare disease experts nationally and
internationally to design and implement innovative programs for the benefit of stakeholders in India. Key
activities and accomplishments of ORDI during 2014 include:
1. ORDI was launched at a formal ceremony at the constitution club of India, New Delhi and was
inaugurated by Dr. K Vijayraghavan, secretary of the department of Biotechnology, India and Dr.
IC Verma, a thought leader in Medical Genetics in India, on feb 18, 2014. Key opinion leaders
and patient advocacy groups participated on the occasion.
2. A peer-reviewed article titled “Organization for Rare Diseases India – Challenges and
Opportunities for Indian rare diseases’ community” reviewing the current state of rare diseases in
India is accepted for publication in Genetics Research journal. The article lead by the seven
founding members of ORDI and co-authored by around 20 scientists and thought leaders such as
Dr. IC Verma from Ganga Ram Hospital in New Delhi, Dr. Jimmy Lin from Rare Genomics
Institute, USA, Dr. Kasthuri Haldar from Notre Dame, USA among others, serves as a
comprehensive review from all perspectives. The full article is attached to this proposal
document.
3. ORDI launched the first ever 24/7 nation-wide rare disease helpline # +91 8892 555 000 to
provide information and advice to patients with rare diseases needing medical or non-medical
assistance. The helpline is the first line of interface between the organization, patients and even
doctors.
4. We have started the development of a nation-wide patient registry for rare diseases in India.
The registry already exceeds a thousand and when fully developed, can enable government policy
making through various statistics for prioritizing focus and budget allocation.
5. With the goal of representing the collective voice of all patients with rare diseases in India, ORDI
reached out to all the existing disease-specific patients advocacy groups (PAGs) inviting them
to join hands with ORDI for a common mission. About fifteen organizations have confirmed
their partnership with ORDI and some have even jointly participated in events. We are in
communication with other PAGs.
6. Early diagnosis and intervention is a key first step in tackling rare diseases. However, the average
time to diagnose a rare disease is over 5 years in most countries including USA. To address this
challenge in India, ORDI has designed an innovative program called Rare Disease Care
Coordination Center (RDCCC) which serves as a nation-wide hub. The hub gathers patient
information, patient needs and pain points. The team at hub then arranges for a consultation for
the patients with rare disease experts at one of their nation-wide spokes setup as Centers of
Excellence (CoEs) for rare disease care located on existing hospital facilities that collaborate
with ORDI RDCCC. The CoEs are jointly staffed by ORDI and hospital partner with standard
operating procedures defined to guide the process of patient care. Since most rare diseases are
multi-symptomatic, effective patient diagnosis and treatment requires a team of specialists to
review case reports and decide on a prognosis. As of Aug 2014, we have three hospital partners
confirmed in south India and two hospitals in north India for CoEs development.

2. Organization for Rare Diseases India
Chennakeshava Nilaya, #10, 4th Main Rd, #2,
Ground Floor, Jaladarshini Layout, Parallel to
New BEL Rd, Bangalore-560054 Karnataka, India
Rare Disease Helpline: +91 8892 555 000
www.ordindia.org
contactus@ordindia.org
https://www.facebook.com/ordindia
7. Raising public awareness about rare diseases and genetics is part of the core mission of ORDI.
Awareness campaigns, press releases, social media and events are all part of this strategy. A
marathon event was organized as part of the annual celebrity Mumbai Marathon where over 50
athletes ran for the ORDI cause. We also made several press releases about a number of topics
including a checklist of tasks and recommendations for the Government of India.
8. Through the establishment of corporate council, we are engaging with a growing list of
companies in India.
a. Strand Life Sciences
b. Centogene India
c. Several other pharma/biotech/diagnostic companies are in active discussions
9. International Activities:
a. Collaboration with Rare Genomics Institute, a US-based international non-profit
organization focused on enrolling undiagnosed rare disease patients into genome
sequencing based clinical research through approved IRB protocols.
b. ORDI founder was a panelist at the World Orphan Drugs Asia Conference in
Singapore, June 2014.
c. Interview with ORDI founder by Total Orphan Drugs magazine and a featured
article.
d. Organizational member of the global alliance for genomics and health (GA4GH).
10. Continuing Medical Education (CME) programs for medical doctors in India: ORDI in
partnership with the PID society observed world immunology day at a one-day symposium on
Primary Immuno Deficiencies with guest lectures by experts including one from USA.
11. Launched the Rare Diseases Information Portal: www.ordindia.org developed by a team of
around 5 software developers funded by Temminova Technologies, international institute for art
culture and democracy (IIACD) and Strand Life Sciences. This is undergoing some significant
enhancements and requires ongoing support for development.
12. First annual Patients Advocacy Groups (PAGs) Meeting organized at MS Ramaiah Hospital,
Bangalore on 31st
Aug, 2014. More than 20 PAGs from all over India participated in the event in-
person or remotely. A plan of action has been prepared to advocate for the common good of
patients with rare diseases in India.
13. Several individuals and organizations are volunteering and contributing to the ORDI cause.
One of our key partners is ABLEindia, a not-for-profit national forum that represents the
Indian Biotechnology Sector. We are in the process of engaging with the broader diagnostic and
pharma industry as stakeholders of rare diseases.