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Lysosomal storage Disorders Support Society (LSDSS) is headquartered in Delhi and headed by a group of parents who know what it’s like to live with Lysosomal Storage Disorders.

 It has been incorporated as a registered* non-profit organization to raise awareness and educate the general people about various Rare Genetic life threatening LSDs.

Pompe disease - the real story
The Duke "deception": what should be done?

There is no cause more dear to me than the advancement of Pompe research. It is heartbreaking, plain heartbreaking, to see that cause tarnished in the way that...

The Duke response

In the 9 August  advance online publication section of Genetics in Medicine, two letters appear . One is from Arnold Reuser  Inconsistent reporting about...

Duke author admits discrepancy

A bit of an update.

Firstly, a letter from Dr Arnold Reuser pointing out the discrepancy in the data has been published in Molecular Genetics and Metabolism,...

Why does the Duke error matter?

Right. As you know, I like to keep things as objective as possible. So I give fair warning that following one more excursion into the land of facts...

What is wrong with the Duke publication?

As regular readers will know, I'm all for keeping things simple. However this is serious and in order to explain why it is serious I'm afraid that there...

One last twist in the tale

Well, here's a story that I wasn't expecting to have to write. If you've followed the Pompe story through this blog (and if not, why not?), then you'll...

2003 - onwards and upwards

2003 signaled the end of one era and the beginning of another.  From now on, news of friends receiving ERT would begin to come thick and fast - every one...

Heidelberg

I go to many conferences as part of my work as well as personal activities and I can honestly say that the 2003 IPA conference remains the best I have...

2003

Before we get into the 2003 big picture, can I just step aside for a moment and mention something of huge significance for me. This was the year that, for...

Maryze's story - Part 8
On March the 29th Myozyme was officially approved in Europe. That special day for Pompe patients, I was at the funeral of a Pompe patient I knew very well. It...

 

 

 

 

 

 

 

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