GOLD, the Global Organisation for Lysosomal Diseases, is an international collaboration of scientific and medical associations, patient groups, and commercial organisations dedicated to improving the lives of all patients with a lysosomal disease.

Lysosomal Storage Diseases (LSDs) are a group of approximately 50 genetic (inherited) disorders, sharing common clinical and biochemical characteristics. Individually, each disease is rare, but by considering all LSDs as a common entity, the prevalence is approximately 1:5000.

GOLD believes significant progress can be made by building consensus and speaking with a united voice on behalf of the Lysosomal Diseases Community across international boundaries.

 

 

MPS 2008 Symposium presentations available

Presentations from the 10th International Symposium are now available for GOLD's member organisations in the Education & Information tab, under Video Presentations

NCL Foundation research funding

Requests for application for  a reseach fellowship award has been made by the NCL Foundation. See members' news or Update for details. Deadline: October 31st 2008.

Management Council Nominees, 2008

Nominations for the places on the Management Council are now closed. As the number of nominees does not exceed the number of places on the council, all are deemed elected. A list of the candidates can be found here.

Call for nominations to GOLD Management Council, 2008

Four members of the GOLD Management Council will retire at the Annual General meeting in June 2008. Nominations for the places on the Management Council are now invited. Further information and nomination forms can be found here.

GOLD Annual General Meeting, 2008

This year's AGM will be held on Saturday June 28th at 5pm, during the 11th International MPS Symposium, Vancouver, Canada. Our Guest Speaker will be Dr William Sly.

More details and reply form

 

Call for Abstracts - 10th International MPS Symposium. ....ABSTRACT DEADLINE EXTENDED

The deadline for abstracts for the 10th International MPS Symposium is now March 1st. See Members' News for more details.

Call for Requests for Funding.

Requests for applications for reseach grants have been issued by The Canadian MPS Society, and NTSAD. See Members' News for more information and to download application guidelines.

GOLD New Year Update

Happy New Year to all our members. A New Year Update can be found here

Batten Disease - opportunities for training and research updates.

Following the success in 2007 of the Batten Disease Professional Interest Group's Training Day and the research lab tour/conference organised by the Batten Disease Family Association, these are being held again in London this year. See Members' News for more information.

GOLD's Annual Report 2006-7

A copy of the annual report for 2006-7 can be found here

GOLD Update

A New Update can be found here

Brains For Brain

Brains for Brain in a new European initiative to develop a co-ordinated approach to understanding the blood-brain barrier and improve therapeutic options for neurological LSDs. See Members' news for more information

Sponsored Swim - Support GOLD

Annie has completed a sponsored swim, the "Channel Challenge" for GOLD.

Call for proposals from member organisations. The UK Gaucher Association, the National Tay Sachs and Allied Diseases Association and the Canadian MPS Society have issued calls for research proposals. See Members' news for information

OUP offer to Members of GOLD. Oxford University Press is offering members of GOLD a 25% discount on the book Lysosomal Disorders of the Brain, Eds FM Platt & SU Walkley.

The book is reviewed here.

To take advantage of OUP's offer click here

US MPS Society "Join the Search" for MPS: Members' news

MPS IIIC gene identified. See Members' news for information

New Members' news page. A new page for Member Organisations' news has been added to the site - see the new item on the index menu.Please contact GOLD if you would like  a news item placed here

Management Council Elections 2006. Results were announced at the AGM on Saturday July 1st. Details of changes to the Management Council, including retiring members and newly elected/co-opted members can be found here

New Areas on this site: 2 new members-only areas are now available under "Education and Information" on the menu panel. Video Presentations and Scriver's OMMBID can now be accessed by our Member Organisations.

Newly Revised Chapter in Scriver's OMMBID: Chapter 151 (ß -Galactosidase Deficiency (ß-Galactosidosis): GM1Gangliosidosis and Morquio B Disease) of OMMBID has been updated by the authors Suzuki Y, Nanba E, Matsuda J, Oshima A. Access under "education and Information" on the menu bar.

GOLD's Annual General Meeting, 2006
was held on Saturday 1st July during the 9th International Symposium on MPS and related Disorders, Venice, Italy. Minutes of the meeting can be found here

Updates:

July2007

January 2007

November 2006

June 2006

March 2006

November 2005

Minutes of Annual General Meetings:

2006

2005

2004

 

Early diagnosis benefits patients
A recent paper by Escolar et al reinforces the importance of early diagnosis for effective treatment of LSD click here.

 

 

If you have any news items you would like to place here, please contact enquiries@goldinfo.org

 

 

 

 
Sponsors | Disclaimer | Contact GOLD | Copyright | Privacy

Registered in England. Registered no: 4738782. Registered Charity No: 1102478
Registered Office: 3 Albion Rd, Chalfont St Giles, Buckinghamshire, HP8 4EW. Company limited by guarantee.