NEW OPPORTUNITY FOR RARE DISEASES IN EUROPE

A NEW OPPORTUNITY FOR THE DIAGNOSIS AND THERAPY OF RARE DISEASES IN EUROPE: THE HSK CENTER FOR RARE DISEASES AND THE BRAINS FOR BRAIN CLINICAL RESEARCH INSTITUTE

On January 1st 2014 a new specialized Center for Rare Diseases has been opened in Wiesbaden, Hessen, Germany.

This new opportunity for patients affected by Rare Diseases, in particular those affecting the Central Nervous System, is offered after a collaboration of two key opinion leaders in the field of Neurodegenerative disorders: Prof. Maurizio Scarpa MD PhD from the University of Padova, Italy and Dr. Christina Lampe MD from the University of Mainz, Germany, joining their expertise to the Department of Pediatrics at the Horst Schmidt Klinik (HSK), lead by Prof. Markus Knuf.
The new Center is located in Wiesbaden, 30 km far from Frankfurt.

The HSK is a hospital of maximum care with 21 specialist clinics and 4 institutes (in total 1030 beds). The Children’s Hospital of the HSK has 110 pediatric beds and 2 intensive care units. The Hospital offers all assessments needed to take adequate care for patients with multisystemic diseases. There is already a full neurological workup with all needed assessments available as well as a very experienced pediatric neurosurgical unit. The Center is part of the Children’s Hospital of the HSK and is in collaboration with all other Clinics of the HSK that are needed for the management of multisystemic and progressive diseases. The HSK is one of the certified centers for patients with tuberous sclerosis and other neurological disorders.
Beside organizing a multidisciplinary rare disease team, the Center is aimed to facilitate and speed up diagnosis, management and treatment for national and international rare disease patients. A major goal will be to improve the patients’ and their families’ quality of life and be the elective meeting point for stakeholders. Furthermore, the Institute will host a basic and clinical research unit for neurological diseases such as neurometabolic and neurodegenerative disorders, inborn malformations and epileptic encephalopathies.

The Center will be integrated with the Brains For Brain Clinical Research Institute, as a joint venture with the Brains For Brain Foundation (B4B) (www.brains4brain.eu). The B4B Clinical Research Institute at the HSK will be the site for basic and applied research projects, organization of clinical trials and educational programmes concerning Rare Diseases including presentations, seminars, meetings, journal clubs, scientific evenings etc. to increase awareness knowledge and interest in rare diseases.
At our knowledge, the Center for Rare Diseases at the HSK is the first non-university Rare Disease Center in Europe.
In order to follow the recommendations of the National Action Plan for Rare Diseases in Germany (published August 2013) aimed at the establishment of a structure of certified centers, the Center is in collaboration with the Network for rare diseases localized at the University of Magdeburg. The network with other hospitals and the sharing of different expertise in the field of Rare Diseases will lead to a better and more specialized care of rare disease patients. The HSK Center for Rare Disease and the Brains For Brain Clinical Research Institute represent a good example of the new concept of medicine based on the collaboration of excellences to create the critical mass needed to improve the management and the quality of life of rare patients.

For more information please contact Prof. Maurizio Scarpa (maurizio.scarpa@hsk-wiesbaden.de) and/or Dr. Christina Lampe (christina.lampe@hsk-wiesbaden.de)