March 7, 2012 | 1:00pm (EST)

Needle Core Muscle Biopsy

The AMDA has scheduled the next webinar.
Here is the link to register:
https://secure.confertel.net/tsregister.asp?course=520307

Speaker: Mark Tarnopolsky, MD, PhD, FRCP (C)

Summary: Traditionally most Neuromuscular Clinics have used an open muscle biopsy for pathological diagnosis. Many Neuromuscular Specialists and Neuropathologists have avoided the use of a needle biopsy technique due to small sample size. The UCH and Bergstrom needles yield small sample sizes in the unmodified state. The UCH needle has a port on the side to apply suction and this definitely increases the yield several fold. There are several strategies to apply suction to the Bergstrom needle and we will describe custom modifications that we have found to yield excellent sample size. The advantages of the needle biopsy technique are; much smaller scar, very high safety profile; adequate tissue size; ability to perform the biopsy within ten minutes in the clinic; and the ability to sample several different muscles that is a function of the EMG and/or clinical examination. This presentation will go over the needle muscle biopsy technique using either the UCH or Bergstrom muscle biopsy needle for research and patient diagnosis.

• AMDA: www.amda-pompe.org

March 30 - April 1, 2012 in Duderstadt, Germany

Annual Meeting of
Selbsthilfegruppe Glykogenose Deutschland e.V.
(German Patient Association)

www.glykogenose.de

October 3-5, 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).

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