Rarediseases Org is a program, which has been designed to create awareness, as well as recognition of all the challenges that are being faced by those people, who are suffering from any type of rare diseases. Any place where the people tend to have rare diseases requires a safe access to the diagnosing procedure and, which are completely provided in detail at rarediseases Org. Moreover, the functional aspect of rarediseases Org is to develop a culture of innovation, which is in complete association with the modern and traditional diagnosing treatment process, as well as the required therapies for every rare disease they have.
The major purpose of rarediseases Org is to inform the people, who have rare diseases about their potential disease condition, as well as their necessary treatment procedures which may include medicinal and therapies in order to get them cured.
The information that can be obtained from rarediseases Org is that has spread out its co-ordination aspects in the areas of:
• Researching about the rare disease.
• Diagnosing, screening as well as preventing that particular rare disease from the patient.
• Recommending treatment for the rare disease.
• Offering customer care and support.
• Planning, as well as commissioning of the services offered to the patients of rare diseases.
• Providing necessary information to patients and professionals about the rare disease.
• Offering family consulting services through which the family members also get to know about the health condition of their patient.
Tips and comments
According to the statistics given by rarediseases Org, below mentioned some facts are to be considered so as to know more about the value of this program.
• 1 person in every 17 people is considered to have a rare disease at any point of their life.
• Presently, there have been registered 6,000 patients suffering from rare diseases which are an alarming situation.
• A total of 75 percent of people affected by rare disease is diagnosed in children and more than 30 percent of such patients tend to lose life before their fifth year of birth.
• The collective rates issued by rarediseases Org conclude that rare diseases are not that rare in the present time.
The rarediseases Org is also offering a financial assistance program through which those people who cannot afford to conduct proper treatment programs will be benefited. For this the patient should provide evidence which clearly indicates that they are suffering from rare diseases and are in need of some financial assistance for the treatment.
Other information that can be obtained from the rarediseases Org is the awareness programs through which people get to know about the rare diseases that have greater probabilities within certain people of a society. The advocacy program that is being offered in rarediseases organization provides mentoring to the patients having rare diseases, as well as assisting those individuals a well that have potential symptoms of developing a rare disease. The program of rarediseases Org is considered as a very good source through, which a patient can seek information along with getting proper treatment for the disease.