“ Nobody can go back and start a new beginning,
but anyone can start today and make a new Ending”
Finding patients of Rare Diseases & giving families hope through diagnosis, expert advise, access to potential treatment and lifestyle enhancement.
Why RDCCC – Patients with rare diseases are large in numbers and remain undiagnosed for long
- Over seventy million patients estimated to be affected with one of more than seven thousand rare diseases across India
- Number increasing every year and it is estimated that 1 in 20 Indians is affected by a rare disease
- In the US and EU, it takes about 5-7 years to diagnose a rare disease. Imagine in India!
- Late diagnosis, subsequent delay in treatment and care only means small chance of survival and a poor quality of life for patients
RDCCC – A strong foundation of hope & integrated care for rare disease patients
First RDCCC in India starting at Bangalore, aims to build critical infrastructure to connect patients with rare diseases and healthcare providers, disease area medical experts, recognized diagnostic centers, genetic counselors, caregivers, treatment options, national and international clinical trials and funding options where feasible
National wide hotline #: +91 8892 555 000
RDCCC will staff dedicated team to answer patients’ phone calls about regional/national/international resources, healthcare specialists, networking opportunities, clinical trials and more
RDCCC – Streamlined working
RDCCC – A shared opportunity & responsibility for all the stakeholders
- It will bring collective expertise and experience of rare disease specialists on one platform aiding increased awareness and understanding among patients and medical fraternity in India
- Companies offering orphan drugs or other treatments for any rare disease can get patient access in India
- More data on rare diseases can further aid research & development for big pharma and biotech companies in India
- ORDI through RDCCC will also partner with pharmaceutical and biotechnology companies to ensure that certain vital medications are available to uninsured or under-insured individuals
- Will help Hospitals to improve their reach to general public, enhancing corporate image in particular and perception of healthcare industry in general
- Rapid diagnosis of rare diseases also means raising a collective voice for rare diseases leading to policy changes at the central and state government levels like incorporation of an Orphan Drugs Act, compassionate access programs through government for potential treatment, duty free import of certain orphan drugs, etc.
RDCCC – Activities
- Interface with RD patients, Care takers, Doctors etc
- Supporting Patients for diagnosis, Treatment, Supportive care, and management for special intervention and Folloups
- Patient education and Interaction program with Specialists
- Training & Education Programs- Doctors, Students, Nursing Staff etc
- Financial and Non-financial support
Model
RDCCC is a Hub and Spoke model
Our experience in India shows that average RD family travels about 600-700 Km to access to speciality care for Rare Diseases. Our aim is to bring it down to 250-300 Km
This calls for min of 4-6 centers in each State We planned to locate a Hub each Capital City and Spokes in regions in strategic locations.
RDCCC – Partner Hospital
We plan to collaborate with Tertiary care Govt Hospital / Multispecialty Hospital in each of our priority cities in Phase 1. We seek expression of interest from like minded hospitals.
Interested Hospitals can write to: contactus@ordindia.in
To know more about this collaboration opportunity.
Supported by – IQVIA
