OPFORD.ORG (Open Platform for Rare Diseases) was originally conceived as a digital and online resource centre for rare diseases with a primary focus of serving patients and caregivers by connecting them to curated resources regarding symptoms, causes, diagnosis and treatment.
This was conceptualized and incubated at the Centre for Health Ecologies and Technology (CHET) and was launched at the Blue Ribbon Symposium for Rare Diseases held in March 2018. Over the past two years, it became clear that there was a need to go beyond being an information repository and engage with the overarching objective of improving health outcomes. This led to the establishment of the OPFORD Foundation. And we also made a small, yet crucial change to what OPFORD stands for to better capture our focus: Open Platform For Orphan Diseases
Our aim at OPFORD Foundation is to improve health outcomes in orphan – or severely neglected – diseases. Many orphan diseases are indeed rare diseases that do not have any approved therapies. However, several diseases which affect tens of thousands of people remain neglected in India (and in other developing countries) even when effective therapies are available, due to gaps in healthcare systems and due to economic constraints. Most of these diseases are inherited genetic disorders and will be the focus of our work at the OPFORD Foundation.
OPFORD aims to catalyse improvements in health outcomes for these diseases by bringing together in-depth expertise in medicine, biotechnology and information technology, through a unique organisational model. We intend to develop targeted solutions that help plug gaps in our healthcare systems. And by taking an open platform approach, our aim is to be able to work with a wide range of partners to maximise our reach among patients.
Furthermore, the unprecedented pace of progress in genomics and gene therapies has brought us to the cusp of a new era in the diagnosis and treatment of inherited genetic disorders. We are at the risk of falling even further behind if we do not create effective ways to participate in the scientific and technological revolution that is now underway. Therefore, even as the OPFORD Foundation works towards improving health outcomes today, we are equally focused on creating platforms that will facilitate our participation in the upcoming era of genomic medicine.
Our initial areas of emphasis will be bleeding disorders and hemoglobin disorders given the relatively high prevalence and high degree on unmet need in India. Apart from the updated OPFORD.ORG website which has been redesigned to reflect our focus on these disorders we also offer counselling services for patients with these disorders through the OPFORD Helpline.
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