Rare Disease Care Coordination Centre

A dedicated set up for Rare Disease Community which caters all short term and long term needs. The objective is to ensure the community gets all required solutions in platform like, medical care, Telemedicine, emergency assistance, training & development, community forums etc.,

Organization for Rare Diseases India had some patients suffering with Rare Diseases. Today, most of the patients are forced to wait for couple of days to get their emergency treatments that too hey travel and come from several hundreds of kilometers. This is the situation in India. Delay in diagnosis/treatments aggravates the condition for further worst levels. If the Rare Disease patient is an adult, then it comes with many unwanted complications right from finding a specialist to treatment. To address all these challenges, we are planning for a complete solution for the Rare Disease Patients and families with integrated system of services. They are , medical care, Telemedicine, emergency assistance, training & development, community forums etc.,

For the organization to manage the above needs a robust software on a single platform.

The concept is planned by keeping in mind the beneficiaries are the Rare Disease Patients. They should get the access to right experts, diagnosis, treatment, therapies within the timelines. Their reports and data should be readily available for any requirements of clinical trials etc.,

We have been supporting the community since 2014. We have the support partners from various hospitals and medical teams associated with us supporting for the cause.

We need the financial support to build & integrate the platform and manage with required infrastructure to serve the community in a efficient manner.

In India, there is no one stop solution for Rare Disease conditions except for the Centre of excellences which are just 8 numbers in count for the whole country. Again here, one has to travel longer distances and come physically irrespective of his/her health condition. 

Our platform gives online, over a call, telemedicine services through technology and innovation. 

No Rare Disease Patient should be left behind the right diagnosis, treatment and therapies. Today, many of the parents struggle with no hope by spending lots of money and time just to figure out what is the disease with the kids. This brings financial and emotional burdens to the families.

The impact can be measured on number of patients who got right diagnosis, who are getting regular treatments and therapies. All numbers are quantifiable.

Aiming for 2000 patients to get facilitated in one year and 20000 by 5 years 

This on number patients who are getting diagnosis and treatment 

Moving from traditional approach to elevated approach in diagnosis and treatment for Rare Disease patients through technology and networking. The support system for financial needs for the treatment, community forums for the benefit of the families, Education models for caregivers and families... These are the plans with 360 degree for the Rare Disease patients

Integrate the Open source hospital management software's with custom made and designed software with required features for the organization. This should capture online, call centre and data points. 

Diversity: We appreciate and leverage the many differences of organization for Rare Diseases India staff and community, and we involve and reflect the various communities we serve through partnerships.

Equity: We design and work on our policies, practices, and resources with the goal of providing people of all backgrounds a genuine opportunity to thrive. 

Inclusion: We strive to create an environment in which everyone feels valued and respected. Solve specifically seeks to support social entrepreneurs who use human-centered, inclusive technologies to solve world challenges. We know that when solutions are designed with the most underserved populations in mind, they benefit everyone. 

We are a national umbrella organization representing the collective voice of all patients with rare diseases in India, setup as a section 25 non-profit company in India.

Vision: A Better Life for people with Rare Diseases.

Mission: ORDI’s mission is to be the strong united voice for all rare diseases in India, to reduce inequalities and ensure that people living with rare diseases have access to the same resources as any other population

Actions:

1. Promote rare diseases as human rights priority through public awareness 
2. Contribute to Public Policy development and implementation such as Rare Disease Policy and Orphan Drug Policy.
3. Collaborate with advocacy organizations from India and people living with rare diseases to connect them with national & international forums such as IRDiRC, UDN, ICORD  
4. Accelerate diagnosis and treatment options for patients with rare diseases through public-private partnerships, advocating mandatory new-born screening
5. Facilitate & encourage research, clinical trial & Orphan drug development activities

For long-term projects like "Rare Disease Care Coordination Centre (RDCCC)" we seek the financial support through donations and grants. For other needs like administrative expnses and awareness events, we seek the funds through corporates sponsors.

We have regular corporate sponsors like IQVIA, Sanofi Genzyme, Takeda, Roche, for our annual mass awareness event "Race for 7" and Lifecell & Pfizer are for our educational awareness programs. We generate between INR 60 to 100 lakhs per annum and equal operational spends.