News
- 16. - 17.04.2013
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2nd Rare Diseases Summer School
Apply now to join us for the 2nd RARE DISEASES SUMMER SCHOOL organized by radiz – the Rare Disease Initiative Zurich, which will take place in the Tagungszentrum Schloss Au, Wädenswil (on lake Zurich), from July 14th to July 16th 2014. radiz is a clinical research priority program of the University of Zurich.
The application deadline is April 11th 2014.
Please refer to our website for current information about the summer school as well as information about the application procedure.
The 2nd radiz Rare Diseases Summer School will focus on a wide variety of subjects in the arena of rare diseases, from disease mechanisms and animal models, to improving diagnoses, to novel therapeutics. There will be lectures and workshops on drug development, model organisms, how to choose clinical endpoints, clinical trials, regulatory aspects, patient registries, patient initiated research, ethical considerations, as well as what rare diseases may tell us about common diseases.
The summer school will contain lectures by national and international rare disease experts, workshops, and poster presentations by participants. A high staff to student ratio will allow participants to optimally benefit from the varied expertise of the faculty. There will be ample time for discussions, teamwork, as well as for socializing. The school addresses clinicians, physician-scientists, postdocs, and PhD students from various disciplines such as medicine, biology, psychology, sociology, and related fields.
- 16. - 17.04.2013
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Conference of the International Rare Diseases Research Consortium, 16-17 April 2013 in Dublin, Ireland Read more about IRDiRC on the European Commission's webpages dedicated to this initiative: http://ec.europa.eu
- 23. - 24.04.2012
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Third Annual Meeting of the HOPE consortium
Largely unmodified in its composition, members of the HOPE2 consortium met for the first time in its now second funding period (2012-2015) and for the third time in its overall funding since 2009 for an annual meeting to discuss current results and future developments. This year, the annual meeting took place in Tübingen at hotel Domizil.
- 29.02. - 02.03.2012
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International Congress on Research 0f Rare and Orphan Diseases - RE(ACT)
Almost 300 people took part in the first RE(ACT) Congress in Basel on the Novartis Campus to discuss research into rare diseases and the development of active substances to treat them.
Press release - 28.02.2012
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Eva Luise Köhler Research Award 2012
On February 28, 2012, the distinction was awarded by Eva Luise Köhler for the fifth time. The pediatrist Dr. Oliver Semler (Köln, Germany) and his interdisciplinary team received the Research Award for Rare Disease, endowed with 50.000 Euro, for their project entitled "Translational therapies for Osteogenesis Imperfecta (OI)".
Additional information (in German only) - 22. - 24.02.2012
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Rare Diseases – Mechanisms and New Therapeutic Approaches
On the occasion of the Rare Disease Day 2012, the Freiburg Center for Rare Diseases (FZSE) is organizing an international and interdisciplinary meeting entitled "Rare Diseases – Mechanisms and New Therapeutic Approaches" to be held from Feb 22 to 24, 2012.
Updated information on program, registration and abstract submission on www.rarediseasescongress.net - 08.04.2011
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Launch of the 'International Rare Disease Research Consortium'
The International Rare Disease Research Consortium (IRDiRC) was launched in April 2011 to foster international collaboration in rare diseases research. The European Commission and the US National Institutes of Health initiated the discussions, and other stakeholders, including other funding agencies, have also been invited to join the consortium. Several national agencies have already expressed their intent to join and Spain was the first country to formally announce its commitment. Ambitious goals IRDiRC will team up researchers and funding agencies in order to achieve two main objectives by the year 2020, namely to deliver 200 new therapies for rare diseases and diagnostic tools for most rare diseases.
- 07. - 08.04.2011
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The Second Annual Meeting of the HOPE consortium was held on April 7th and 8th 2011 in Potsdam, Germany
- 28.02.2011
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Rare Disease Day 2011
http://www.rarediseaseday.orgThe Rare Disease Day is being coordinated by EURORDIS and organised with rare disease national alliances in 25 countries. On that day hundreds of patient organisations from more than 40 countries worldwide will be organising awareness-raising activities and converging around the slogan "Rare but Equal".
- 08. - 09.04.2010
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The First Annual Meeting of the HOPE consortium was held on April 8th and 9th 2010 in Potsdam, Germany
- 01.03.2010
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Eva Luise Köhler Research Award 2010
On March 1st, 2010, the distinction was awarded by Eva Luise Köhler, patron of ACHSE, in Berlin, Germany, in the presence of Her Royal Highness the Princess of Asturias, Letizia Ortiz Rocasolano, and the Federal President Horst Köhler. The physicians Dr. Karin Jurkat-Rott (Ulm, Germany) und Dr. Marc-André Weber (Heidelberg, Germany) received the Research Award, endowed with 50.000 Euro, for their project on improving pharmacotherapy for people suffering from hypokalemic periodic paralysis (HypoPP).
Additional information (in German only) - 22.01.2010
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First Research and Treatment Centre for Rare Diseases in Germany
The Research and Treatment Centre for Rare Diseases Tuebingen (ZSE)
aims at adequately treating patients that suffer from different types of rare diseases, at promoting research on rare diseases on a local level as well as in national and international networks and at fostering multiprofessional cooperations. In January 2010, the Centre was officially established.
Prof. Bernd Wissinger, scientific coordinator of the HOPE-project, is vice-representative of the Centre for Rare Ocular Diseases, one of the six special centres consolidated in the ZSE.
Press release of the Universitaetsklinikum Tuebingen, 22.01.2010, in German only.
Germany inaugurates first centre specifically for rare disorders
Please also refer to orphaNews Europe - Newsletter of the Rare Diseases Task Force
National & International Policy DevelopmentsOn 22 January, an inaugural ceremony was held for the Centre for Treatment and Research on Rare Diseases situated at the University Hospital Tübingen. German First Lady Eva Luise Köhler, patron of Germany's Alliance for Chronic Rare Diseases (ACHSE) and a dedicated supporter of the rare disease cause, was on hand for the ceremony. The new centre, initially composed of six units focusing on specific groups of rare disorders (neurologic conditions, cystic fibrosis, ophthalmologic disorders, cutaneous diseases, congenital infectious diseases, and disorders of sex differentiation), will take an interdisciplinary approach to the diagnosis, care and treatment of patients and will also provide a conduit for research into therapeutics. Indeed, the new centre seeks to provide a bridge between fundamental and applied research, facilitating the participation of patients in new clinical studies. Over three million persons are affected by rare conditions in Germany. The centre will encourage collaborations with patient organisations and specialised societies. Furthermore, the creation of a register for orphan diseases and a centralised biobank are being planned. The centre will also offer specialised rare disease training that will target medical students and health professionals. Professor Olaf Riess, director of the University of Tübingen's Medical Genetics department is spokesperson for the centre's board and Professor of Clinical Neurogenetics Ludger Schoels is vice-spokesperson.
- 07. - 08.10.2009
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The First Scientific Meeting of the HOPE consortium was held on October 7th and 8th 2009 at the Hanse-Wissenschaftskolleg in Delmenhorst, Germany.
By request of all members of the 7 subprojects involved, this special meeting was held in addition to the Annual Meeting, providing an excellent platform to discuss the latest advances, give mutual advice and strengthen the ongoing collaborations between the different research labs, e.g. by offering methodological advice.
Participants spent a great deal of time for the closing discussion, defining common future topics, such as:
- Cooperate closely with the 16 networks for rare diseases currently funded by the BMBF to develop a common concept for network-spanning activities
- Strongly involve and promote young scientists
- Define patient population(s) with need to be investigated by the consortium
- Define common animal models best suited for the projects
The next meeting of the HOPE consortium will be held on April 8th and 9th 2010 in Potsdam, Germany.