The Rare Disease Day is celebrated on the rarest of days, as the leap year’s extra day in February was chosen to commemorate and give attention to rare diseases across the globe. Patients suffering from strange diseases are often ignored or can’t be successfully treated, as the research for its disease doesn’t receive proper funding.
So it’s important to raise awareness and improve diagnoses that could lead to developing adequate patient care and treatment. Training and information regarding rare diseases are a must for communities around the world, as nobody is off the hook from getting one. However, according to the National Hospital of Pediatric, Vietnam is accounted for 100 out of more than 7,000 rare diseases reported across the globe.
The announcement was made at a conference held on Sunday to point out the International Rare Disease Day. It’s important to know what it is required from a disease to be called rare. And it’s no wonder the research for this type of diseases is not being funded as it’s defined as one that affects one in 500 people, up to one in 2,000 people. In spite of this, foundations have been created in order to address the issue of the strangest diseases ever reported and figure a solution or treatment able to help suffering patients.
An optimistic sight for rare disorder patients
For instance, the Recordati Rare Diseases Foundation was created with the mission to fill the educational gaps and to increase awareness in this area. The Foundation has made a tradition out of organizing professional education and teaching courses, which are highly specialized in the area of rare diseases. These events help to create a much-needed network of specialist of rare diseases.
It also helps with the recognition, identification and management of rare diseases and to find new treatments in the field. The National Organization for Rare Disorders received an unexpected gift as the Cydan Development unveiled an orphan drug accelerator dedicated to creating therapies that impact the lives of people enduring rare genetic diseases.
“We are proud to support NORD’s effort to develop natural histories for many rare diseases,” said CEO and Co-Founder of Cydan Chris Adams, Ph.D. “A program that will provide researchers with disease specific data that can accelerate pre-clinical development of new therapeutics.”
Adams’ first company Vtesse is developing drugs for NiemannPick Disease Type C or NPC for short, and other rare disorders with a great necessity for treatment. Rare Disease Day, which falls on the last day of February given that is not a leap year, has the goal to raise awareness among the general public and to shed a light of hope for patients worldwide suffering from rare disorders.
Source: Business Wire