The International Rare Diseases Research Consortium announces its second conference with renowned speakers
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The second conference, organised by the International Rare Diseases Research Consortium (IRDiRC), will be held on 7-9 November 2014 in Shenzhen, China, in collaboration with the Beijing Genomics Institute (BGI).
IRDiRC, launched in April 2011, is dedicated to finding treatments and diagnoses for rare diseases through facilitating partnerships between researchers and organisations investing in research on rare diseases. IRDiRC aims to achieve two main objectives by the year 2020, namely contribute towards delivering 200 new therapies for rare diseases and developing the means to diagnose most rare diseases. The first IRDiRC conference took place in April 2013 in Dublin, Ireland.
BGI, founded in Beijing in September 1999 and relocated to Shenzhen in 2007, aims to support the development of science and technology, build strong research teams and promote the development of scientific partnerships in the field of genomics. BGI projects include, among others, sequencing 1% of the human genome for the International Human Genome Project.
The conference will gather top scientists from Europe, North America and Asia for dynamic exchanges on knowledge and expertise. The event will also include an educational track. The ambition of this conference is to provide researchers with opportunities to establish new collaborations and confront different cultural approaches to the challenges posed by rare diseases.
The conference will take place at the Futian Sheraton Hotel, Great China International Exchange Square, in Futian District.
Shenzhen, north of Hong Kong, is a coastal garden city, renowned for its particularly pleasant climate in November, delicious local cuisine, shopping and tourism in a friendly environment.
Travel to the hotel takes 30 minutes from Shenzhen Bao’an International Airport (SZX) and one hour from Hong Kong International Airport (HKG).
You may need a valid passport and visa to travel to China. Please contact the embassy of your country for more information.
Registration for this event will open shortly.
Access the conference website
Italy's health ministry announced in October that the Stamina Foundation - the foundation that demanded funds to test its fraudulent stem cell treatment on rare disease patients - will be banned from performing its treatment. Initially €3 million were earmarked for Stamina’s stem-cell treatment, due to public pressure. However, the outrage of the scientific community around the world, over any proposal to fund their controversial claim to cure rare disease patients with their stem cell protocol, took precedence. These trials have now been suspended and Stamina Foundation has been stripped of its non-profit status. In addition, the head of the foundation, Davide Vannoni, a former psychology lecturer, was indicted earlier this year for alleged attempted fraud in the Piedmont Region in Italy (
In India’s first landmark judgement on medical aid for rare diseases, the Delhi high court today directed the Delhi government to provide monthly medical treatment, free of cost, to a child afflicted with a rare disease (Gaucher’s disease). This, the court said, would be in fulfilment of the state’s constitutional obligations of free medical aid to economically marginalised sections of society. The case was brought about by the father of the child who could not afford the burden of enzyme replacement therapy costing Rs 6 lakh ($USD 12,000) per month, necessary for lifelong treatment for the rare disease. Although there is no provision for universal healthcare in India, this decision is being seen as one of the factors which might influence the government towards policies for healthcare coverage, especially for rare disease patients. 
An interesting study presents demographic variability in patients suffering from Gaucher disease by studying the 
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