– that’s why Sobi is supporting the Rare Disease Day® 2013 and participating in public-private partnership clinical trial programmes for rare diseases
The 6th International Rare Disease Day® is a unique opportunity to raise awareness of rare diseases; and of the real people – just like you and me – who suffer from these conditions.
The teams at Sobi have been active in researching, developing and manufacturing treatments for rare diseases for more than 30 years. Today, we serve patients in more than 20 countries in Europe, as well as other parts of the world, such as the US and Middle East. There is still a long way to go, however. Many people with rare diseases are still waiting for treatments to be developed.
It is important for our society to ensure that no patient is left behind, just because they have a disease that is rare, or is less well-known. Many of the patients affected are children. Without treatment, many will die or will not be able to live happy and healthy lives.
We at Sobi believe that “Patients suffering from rare conditions should be entitled to the same quality of treatment as other patients”. And this year is a key year in taking another important step forward, because all European governments have committed to elaborate and adopt a National Plan or National Strategy for treating Rare Diseases by the end of 2013. This governmental commitment should ensure that people suffering from rare diseases can have access to the most effective diagnosis, treatment and care.
We know our governments in Europe takes this responsibility as seriously as we do, which is why we are proud to stand together with all of the stakeholders again on this 6th Annual International Rare Disease Day to continue to raise awareness of Rare Diseases.
Another area where Sobi is convinced that collaboration can make a difference in the development of effective treatments for rare diseases is via public-private-partnerships, especially for very rare diseases and conditions. This is also why we are proud to be a member of the European multi-stakeholder consortium – DevelopAKUre – initiated by the patients, which aims to develop the first ever treatment for Alkaptonuria (AKU), a rare, debilitating genetic disease that affects patients’ cartilage and bone.
This public-private partnership development programme has been instigated by AKU patients’ representatives together with experts at the Royal Liverpool University Hospital, and has been funded by funding from the European Commission’s research framework programme. Sobi believes that such collaboration is a prime example of an effective way for all stakeholders in the rare disease field to cooperate to find effective treatments. The programme has been selected to be featured in a European Commission press release with information about Framework Programme-funded projects related to rare disease. This will be published on the occasion of Rare Disease Day® on 28 February 2013 in the EU newsroom.
Sobi is an international specialty healthcare company dedicated to rare diseases. Our mission is to develop and deliver innovative therapies and services to improve the lives of patients. We work in partnership with patients, physicians and payers to shape and sustain healthcare systems able to deliver optimal care to rare disease patients.