When Indian Organization for Rare Diseases (I-ORD) - a not-for-profit entity - was launched way back in 2005 in India and the USA, it was a proverbial small step towards a thousand-mile journey but we have crossed several milestones since then.
We are an umbrella organization and represent interests of all rare disease patients, patient support groups, health policy advocates and health care providers for rare diseases.
The Indian Council of Medical Research has recently come out clear on Rare Disease stating 'disease or disorder is defined rare in India when it affects fewer than 1 in 2500 individuals' while rolling out an India-wide registry on 27th April 2017.
This after intense advocacy efforts by several stakeholders including a significant role played by I-ORD.
The work is not done yet as there are hundreds of challenges to address at different levels from advocacy, collaboration with different RD stakeholders to lobbying with policymakers on several issues such as Orphan Drugs Policy.
For instance, the Government of India has no public policy on Orphan Drugs yet. The problem is further compounded by the lack of trained doctors or diagnostic labs etc.
What's worse, there are no incentives to Indian pharma industry to develop Orphan Drugs.
There is no awareness of rare diseases among people. Un-education and poverty contribute further and makes healthcare out of bounds for the patients. It is hard to find information on rare diseases either for families or professionals.
Often, rare diseases are treated as a social stigma by the society and invariably the burden falls on the mother more than the father. The families affected by rare disease are isolated in their communities with little or no access to disease-specific information.
This is why I-ORD appeals to the stakeholders including RD patients for lending a helping hand to strengthen the cause of RD movement by actively collaborating/partnering with us as we believe the goal is reached faster when united.
Join us if you are one of the following stakeholders:
Rare Disease Patients
That you are not alone has been IORD's unequivocal slogan for the last 15 years. Our objective is to reach all households in India with rare disease patients.
With a slogan of 'Each One, Identify Ten', I-ORD strives for their rights with either advocacy or treatment facilitation & help them lead a dignified life with one or more of the following advantages:
Patient-Centric Information
Platform for Voicing
Disease-Specific Patient Registry
Rare Disease Advocacy
Symposiums on Rare Disease
Treatment Facilitation
Disease Awareness & Prevention
RD Patient Rights
We invite those interested to sign-up through our Rare Disease Patient Registration Form to help us understand you.
NGOs/ Patients' Organizations
Being an active member in various international fora on RDs including NGO Committee for Rare Diseases at UN, Rare Diseases International, International Rare Disease Research Consortium (IRDiRC), Asia Pacific Alliance of Rare Disease Organizations (APARDO), EURORDIS of EU make us globally networked.
The learnings we have gained to address RD patient issues and the new ideas we bring on the table can help you grow your resources and network with other like-minded organisations.
We provide guidance and support to patients organizations and help them grow from inception to various stages of their development with our leadership.
IORD invites interested NGOs/ Patients' Organisations in partnering with us & fill up this Patients’ Organisations Registration Form.
Be an I-ORD Volunteer
If you are an expert, you can work for the change you want to see as your one step can make a big difference to the life of a patient, if not for everyone.
Wrong RD diagnosis in the first physician visit stands abysmally high at 40%, while the average time it takes from a symptom to a proper diagnosis stands at 4.8 years as per an Orphanet Survey in EU.
We invite experts - be it a medical expert, researcher or a counsellor - to lend a helping hand with I-ORD and make a positive difference in the lives of Rare Disease Patients by improving the quality of life for these patients.
Those interested can partner with us by filling up this volunteer registration form.
For any further information, please write to: [email protected]
Call: 9666438880
www.i-iord.org
