Ensure Access to Orphan Drug Therapies through Collaborative Efforts with Government, Researchers and Patient Groups In 2012, CBI is proud to present its 7th Annual Rare Disease and Orphan Drug Leadership Congress at a critical time for this community. Advocates of the 5,800 rare diseases that have no commercialized treatments...
Events
Welcome to the 1st European Conference on Aniridia The Norwegian Association of Aniridia (Aniridi Norge) is pleased to announce that the 1st European conference on aniridia will take place in Oslo from 8th to 10th June 2012. Oslo is beautiful in the summer, but expensive to visit. Funding has been...
1st Eurasian Conference on Rare Diseases & Orphan Products and Third All-Russian Conference for Rare Diseases and Rarely Used Medical Technologies “Lifeline”. One of the features of this event will be the simultaneous participation of all parties interested in developing the treatment, diagnosis, and working out innovative treatments for rare...
WELCOME TO ICELAND It is a great pleasure to invite you to the 2nd Nordic Conference on Rare Diseases Reykjavik May 31 and June 1, 2012 The meeting will focus on co-operation to improve knowledge within the Nordic countries regarding Rare Diseases. The organizing committees welcome you all to share knowledge, interesting research, projects...
HAEI – International Patient Organization for C1-Inhibitor Deficiencies is a global organization dedicated to raising awareness of C1 inhibitor deficiencies around the world. It is a non-profit international network of national HAE patient Associations. HAEI is established to promote co-operation, co-ordination and information sharing between HAE Specialists and National HAE Patient...
Over the years, limb lengthening has proven to be the main and only treatment “choice” for people with achondroplasia. On its 25th anniversary and through an international meeting with orthopedic surgeons, AISAC wants to take stock of the numbers, the results, and the “progress” of this method, as well as discuss...
The NET (Neuro-endocrin tumor) Group Information day of Holland and Flanders, will be held at Amersfoort-Noord, NL Information Program Location Ambiance Houtrust Heideweg 23 3829 BC Hooglanderveen (Amersfoort-Noord)-NL visit www.houtrust.com
The next EURORDIS Membership Meeting (EMM) takes place on 23 May 2012 in Brussels in conjunction with the European Conference on Rare Diseases and Orphan Products (ECRD Brussels 2012) at the Management Centre Europe (MCE) Conference Centre. This year, the EMM includes the general assembly, forums and capacity building workshops....
The recognition and declaration of a World Pulmonary Hypertension Day is a step forward in the consolidation of worldwide PH awareness. World PH Day will focus on the importance of improving the quality of life and life expectancy of more than 25 million people living with PH worldwide. Pulmonary Hypertension...
Driving business performance through partnering, networking and in-depth discussion. Seven years after its inception the European Union (EU) regulation on Orphan Medicinal Products has yielded over 500 orphan designations leading to some 45 orphan drugs been approved for marketing in the EU. Of these 500 over 60% were developed by...
Please join the Spina Bifida Association (SBA) for the 39th National Conference to be held at the Indianapolis Marriott Downtown (June 28-July 1). Children and adults with Spina Bifida, their families, and health care professionals in the Spina Bifida field have the unique opportunity to gain information on the latest...
The 10th EWGGD Meeting will be held from June 28th to 30th, 2012 at the Novotel Paris Tour Eiffel in the heart of Paris. Representatives from the European Gaucher Alliance, the patients’ association and a key partner of the conference, will share their experience and questions with the scientific community....
You are cordially invited to the 35th European Cystic Fibrosis Conference, which will take place at the Convention Centre Dublin (CCD), Ireland’s new world class purpose-built international conference and event venue. Read more on Cystic fibrosis The objective of this conference is to provide a forum for the discussion of...
The 10th International Primary Hyperoxaluria Workshop will be held on June 22-23rd in the World Conference Center, Bonn, Germany. Read more about Primary Hyperoxaluria Type I and Type II. Please see the Program and Registration form to attend
Prof. Dr. Holm Schneider and Friedrich Wilhelm Neukam are pleased to announce the 5th International Conference on Ectodermal Dysplasia (ED2012) which will be held in Erlangen, Germany, on June 1-3rd, 2012. The ectodermal dysplasias are a large, heterogeneous group of hereditary disorders characterized by defective formation of tissues derived from...
BioMed Central will hold its first conference on Metabolism, Diet and Disease in Washington DC from 29-31 May 2012. The aim of the conference is to show how basic research on the biochemistry, cell biology and genetics of metabolism can address the major health problems of cancer, obesity, diabetes and...
Join specialists from Children’s Hospital of Pittsburgh of UPMC and distinguished faculty from around the world for a two-day conference to explore the treatment of metabolic diseases, including the potential use of liver or hepatocyte transplantation as a therapeutic modality. The specific metabolic diseases to be addressed include the following:...
The PHA will hold the 10th International Pulmonary Hypertension Conference and Scientific Sessions, on June 21-22nd (Scientific sessions) and 22-24th (Conference) at the Renaissance Orlando at SeaWorld, Orlando, FL-USA. In 1990, four women gathered around a kitchen table in Florida and started an organization that would become the Pulmonary...
The European Human Genetics Conference will be held on June 23-26, in Nuremberg, Germany. Program
The 4th International Conference on Primary Central Hypoventilation Syndromes will be held on 13-15th April 2012 in Warsaw, Poland. PCHS, also called Congenital central hypoventilation syndrome is a rare, inborn condition which involves a specific gene, PHOX2B. All information on the symposium available online Links related to major institutions Detailled programm...