Rare-X

Patients facing rare medical conditions that are undiagnosed can face specific challenges in obtaining adequate care and support systems. Undiagnosed patients cover those who are not still diagnosed" since their relevant medical specialist has not been associated with them, as well as patients who have a condition not previously described and for whom there is still no diagnostic test available. In this case, without any research, you can't make any improvements and find cures. Data collection allows many researchers and doctors to learn about the trends and determine what is right or what is not. So, in this field, data collection and gathering hold vital roles. They can be used further and help in extremely rare genetic disorders .  The main goal of the Database of Undiagnosed Rare Diseases is to carry out an experimentally planned and organized study of a natural history that will lead to the most detailed understanding over time of rare undiagnosed diseases and the ins

  It is certainly not easy to diagnose genetic rare disorders since it absolutely takes a lot of research and effort. Even the doctors globally work day and night for years to find the solution or diagnosis of people's genetic rare disorders. There are many genetic disorders rare , which many people suffer and go through deeply with so many struggles. It is extremely crucial to know and diagnose these disorders, which sometimes create hurdles in many individuals' lives. Rare Disease Registry: It is analyzed that 8 out of every 10 diseases have been classified as rare diseases. In other words, 99% of the diseases are encountered as a rare disease registry . Also, these general conditions are risky and critical. On average, doctors take 4 to 5 years to have thorough research and analysis over a particular disease diagnosis.   Data Platform and Services for the Genetic Disorders Rare: Having a platform for genetic disorders rare is immensely relevant and great. The non

  Patient advocacy groups for rare diseases are essential yet underutilized to expedite drug development as of today. The rare diseases patient communities have considerably transformed and evolved over the past ten years to facilitate the patients with medical conditions or potential medical conditions. Rare Disease Patient Advocacy Groups are formally organized groups with a mission and concept. These groups take steps that attempt to support people affected by those rare medical conditions along with their families. Patient advocacy groups are nonprofits groups that raise funds for research. The groups help in- ·          Defining meaningful clinical endpoints ·          Serve in the design of patient-reported outcomes ·          Design and manage registries ·          Provide information on clinical trials and ·          Help communicate about the most promising compounds for rare diseases Patient Advocacy Groups become a member of administrative decision-making bodie

  No unifying definition of rare disease has been given till date, but in the US, it is described as a condition that affects less than 2,00,000 individuals in the United States. Registry of rare diseases is done to ensure that clinicians, researchers, and drug manufacturers have access to 'The Right Data at the Precise Time,' powered by the patients' data. The technology platform to Rare Disease Registry includes technology to back four fundamental objects. These are- ·          Accelerating Diagnosis ·          Scaled and Efficient Patient Owned Data Collection ·          Increased Data Access and ·          Broad Analysis 8 steps to a rare disease registry The eight steps described here illustrate how a patient organization raises its visibility & garner attention from academics and pharmaceuticals to examine their disease. 1.        Design your registry 2.        Launch the simple population registry 3.        Customize the registry to record long