You are Not Alone. This has been IORD's unequivocal slogan for the last 15 years. Our objective is to reach all households in India with rare disease patients & strive for their rights.
 
We need more of you to come on to a common platform with IORD - an umbrella organization representing all the rare disease patients & patient organizations - playing the lead facilitator in this pursuit.  
 
In short, our effort is to bring: 1. Awareness, education of patients/parents about rare diseases in India 2. Advocacy with the government of India for a workable national policy on rare diseases & orphan drugs.  
 
Why rare diseases patients should come together?

1. Patient-Centric Information: Our volunteers will connect you with families fighting similar rare diseases & facilitate setting up of an informal support group to move ahead.  
 
2. Platform for Voicing: Collective expert voice for a specific rare disease will strengthen your cause IORD's association.
 
3. Disease Specific Patient Registry: IORD will facilitate the creation of a disease-specific patient registry to enable comprehensive management & monitoring of all patients in real-time. This disease-specific data would have a global connect & enable cutting-edge research for patient group's betterment.
 
4. Rare Disease Advocacy: Representation to government at appropriate forums for mounting effective advocacy with the policymakers for introducing Orphan Drugs Bill to give rare disease patients a much-needed legal framework to protect their rights.
 
5. Symposiums on Rare Disease: You can connect with different stakeholders both inside and outside the government at local and international symposiums on rare disease. These interactions can sometimes open new doors for rare disease patients.
 
6. Treatment Facilitation: The course of many rare diseases remains uncertain, making caregivers no hope of a solution as India may not have costly medicines & injectables. This would call for facilitation by the likes of IORD for easy access if it’s possible.
 
7. Disease Awareness & Prevention: Several rare diseases are preventable through advanced genetic screening, but it can happen when there’s enough awareness. With your association, IORD will strengthen preventive measures for rare diseases.
 
8. RD Patient Rights:  Implementing legal & constitutional rights of patients calls for concerted steps so that no patient is deprived of his or her right. In many situations, the concept of legal rights may not exist but your association with I-ORD can ensure we take up the issue at appropriate levels.
 
Help IORD with 'Each One, Identify Ten'.

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For any further information, please write to:
Indian Organization for Rare Diseases
5th Floor, Vasant Towers, Lane Beside Shoppers Stop
Opp: Max vision, Secunderabad, Telangana 500016
http://www.rarediseases.in/
Ph: 096664 38880
Email: info@rarediseases.in, indiaord@gmail.com