India Pompe Awareness Day, June 1st 2013

The LSDSS (Lysosomal Storage Disorder Support Society) started its first India Pompe Awareness Day in 2012. The Day has been established to help get media attention and national recognition for rare diseases. The idea was born by the good results of MPS Awareness Day that is globally celebrated at May 15.

LSDSS also created Gaucher Day (11 September) and Fabry Day (12 December).

Currently the program of India Pompe Awareness Day isn't available yet.

November 28-30, 2013 in Heidelberg, Germany

International GSD Conference

For the first time, an international conference will bring together liver and muscle types of glycogen storage disease (GSD). World experts will discuss the state of research and therapies for the muscle and liver types in parallel sessions. The exchange of experiences will be stimulated by plenary sessions, addressing the challenges of rare diseases, developing therapies for rare diseases, and the benefits of building communities. Patient group representatives will complete the picture by contributing the patients' perspective. Special sessions for the most rare GSD types are an option, as well as workshops for specific topics. Scientists can expect a high-level scientific conference; patients can use it as a forum for first-hand information and community. The conference will contribute to a better understanding of the GSDs, encourage progress in therapies and disease management, and facilitate the formation of networks of both scientists and patients.

The conference program will cover the GSD liver types I/III (von Gierke/Cori disease) and the GSD muscle types II/V (Pompe/McArdle disease) as well as other rare GSD types.

Please find more information on the conference website (conference2013.worldgsd.org) and register for the newsletter to receive updates of the conference.