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Rare Diseases

A HEALTHCARE PRIORITY - A RECORDATI PRIORITY 

A rare disease is defined as a condition that affects fewer than 5 per 10,000 inhabitants in Europe or fewer than  200,000 Americans in the U.S.A.  

 

They are mostly genetic diseases that can affect patients of any age, sex or ethnic origin and involve any type of medical specialization. Very often sufferers are newborns, children and young adults. Over 30 million people are affected in Europe alone. There are over 7,000 known rare diseases but today treatment exists for only around 300 of these. An orphan drug is a medicinal product developed for the treatment of a rare disease. Patient numbers are so small that a rare disease is often not “adopted” by the pharmaceutical industry and hence the expression orphan drug.

Due to the extensive spectrum of existing diseases physicians may never see a patient with a rare disease. For that reason there’s always a risk that when a baby is born with a rare disease a correct diagnosis may not be made and appropriate treatment may not be provided.

RECORDATI RARE DISEASES: THE RECORDATI COMPANY DEDICATED TO THE TREATMENT OF RARE DISEASES (website)

The Recordati group operates in the rare disease segment worldwide through its dedicated subsidiary Recordati Rare Diseases which shares the conviction that each person with a rare disease has the right to the best possible treatment.

Recordati Rare Diseases is dedicated to the research, development and marketing of treatments for rare diseases and is one of the most active pharmaceutical companies in the field.

Treatments for these diseases are commercialized directly in Europe, the Middle East, U.S.A., Canada, Russia, Australia, Japan and in some Latin American countries, and through selected partners in a number of other countries.

Dedicated highly trained orphan drug specialists and a scientific support team are in constant contact with physicians, healthcare professionals, researchers, academics, opinion leaders, patient associations and families to improve the lives of people affected by rare diseases and alleviate their suffering. The network of orphan drug specialists visits clinicians from many disciplines that diagnose and/or treat patients suffering from rare diseases and develops key contacts with hospital pharmacists, specialist nurses, biochemists and dieticians in these highly specialized disease areas. In addition to their medical and pharmacological knowledge of rare disorders the orphan drug specialists are also trained in all aspects of orphan drug development and registration.

Recordati Rare Diseases has designed a direct distribution and packaging system able to efficiently deliver very small quantities of specialist products to people around the world at a moment’s notice. The new manufacturing site for the treatments for rare diseases in Nanterre (Paris, France) occupies a surface area of 1,200 sq. m., is GMP certified and is entirely dedicated to the packaging, storage and shipping of rare disease products in all countries.
 

 RECORDATI RARE DISEASES FONDATION D’ENTREPRISE - OUR COMMITMENT TO RARE DISEASES (website) 

The acquisition and diffusion of specific scientific knowledge is fundamental for the identification of a rare disease and is of great importance in the research for new therapies. Recordati is committed to support families suffering from the impact of a rare disease both through the research and development of new treatments as well as through the diffusion of knowledge within the scientific community.

Working in the field of rare diseases is an important responsibility to patients and healthcare professionals. The Recordati Rare Diseases Foundation was launched to provide unconditional grants for training in rare disease. High-level courses are created under the authority of a scientific committee. The overall aim is to share experience in the management and outcome of rare disorders where individual experience is by its nature limited. The Foundation offers specialists the opportunity to enrich their knowledge, develop new ideas and establish scientific relationships. A number of events are held each year bringing together clinicians and scientists from all over the world to discuss innovations and new diagnostic and management strategies.

The Foundation also provides online e-learning courses which aim to provide physicians, world-wide, with clinically useful and the most up-to-date information concerning current knowledge and recommendations for care. 

Furthermore, we work in partnership with recreational camps for children with serious debilitating diseases through our staff volunteering program. We also support the work of European reference networks in providing equal and equitable care for all patients with a rare disease.