Defined as a disease which affects less than 1 in 2,000 people in the EU, rare diseases are often chronic, progressive and degenerative. In addition to the disability these diseases cause, they can often be life-threatening and have no cure.
With over 6,000 different rare diseases now identified, it is estimated that over 30 million European people suffer from a rare disease. 80% of these diseases have genetic origins whereas the others are the result of infections (bacterial and viral), allergies, environmental causes, or are degenerative and proliferative. As well as varying from disease to disease, these conditions also vary from patient to patient, making this group of conditions very difficult to treat and manage. In addition, many of these diseases affect children; with 30% of children diagnosed with a rare disease dying before the age of five.
Unfortunately, misdiagnosis and delay in treatment is commonplace when dealing with rare diseases.
This leads to difficulty in accessing the appropriate treatment and care needed and can place heavy and social burdens on patients and their families. In many cases, there are currently no effective cures and this leads to additional pain for both.
Consequently, there is a real need to share scientific knowledge around these conditions. The good news is that this is now beginning to happen; with biotech and pharma companies researching and developing more and more innovative treatments for rare diseases.
Although, enormous progress is being made every day, more is needed. This is why EURORDIS (Rare Diseases Europe) is holding its 9th International Rare Disease Day, to raise awareness of these unknown conditions.
Rare Disease Day aims to improve national and international advocacy, increase research into orphan drug development, ensure equal access to quality treatment and care and importantly reduce the isolation felt by patients and their families.
Cuttsy and Cuttsy are working more and more in this disease area and understand the burden of living with these conditions for both the patients and their families. In addition, the theme of Rare Disease day is ‘Patient Voice’, which recognises the crucial role that patients play in voicing their needs, something we as a company feel very passionate about.
So join us and ‘Raise and Join Hands for Rare Disease Day’.
1. www.eurordis.org/content/what-rare-disease Accessed Feb 2016
2. www.rarediseaseday.org/article/what-is-rare-disease-day Accessed Feb 2016