A rare disease is a disease that occurs infrequently in the general population. In order to be considered “rare”, each specific disease cannot affect more than a limited number of people out of the whole population. For example, in Europe it is defined as 5 in 10,000 inhabitants. Most rare diseases are genetic, and many of them appear early in life. It is estimated that about a third of patients with rare diseases will die before reaching the age of five. With scientific advancement & progress, we are able to diagnose and treat some of the rare disease, yet most rare disease are difficult to diagnose, with scarce diagnostic resources and fewer treatments. As the disease knowledge landscape changes rapidly, newer, anticipated and unanticipated health solutions become priority. With new needs, new technologies being adapted in all spheres of human life; we see an opportunity for key stakeholders in HEALTH - to connect, to share possible solution, to find newer solutions, to speak, to create awareness, to influence and guide policy makers & investors in Healthcare. Rare & Genetic Disease Research Network is an initiative by Transintegra Research & Care Foundation. It was was formed with an objective:
To bring awareness about some of the difficult to treat diseases;
To bring together healthcare providers such as doctors & researchers, patients & caregivers, policy makers, private industry into a common platform for sharing information about the difficult to treat diseases, newer research tools, newer diagnostic methods and newer treatment options;
To share information on current research in the areas of difficult to treat diseases;
To advocate participation of doctors, researchers and patients in research programs, aimed at bringing new knowledge in disease incidence & prevalence and unmet medical needs;
Participation in International and national disease awareness and advocacy programs;
To collaborate with International and National research organization and Government bodies in conducting disease awareness and in conducting research. It shall provide a platform for those who think, have passion, and wish to share and participate in Research for difficult to treat diseases. It shall allow to share knowledge, experiences, newer thoughts that might improve our understanding of clinical and laboratory diagnosis, the practice of managing difficult to treat rare & genetic diseases, to improve epidemiological knowledge – and improve outcomes – “for patients” and “healthcare providers”.
