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  Previous Meetings:
 

 

ANNUAL SYMPOSIUM 2010
(February 2010, Miami, FL, USA)
download .pdf 

 

ANNUAL SYMPOSIUM 2009
(February 2009, San Diego, CA, USA)
Program

ANNUAL SYMPOSIUM 2008
(February 2008, Las Vegas, NV, USA)
Meeting Program Now Online!

And as a .pdf file
 

ANNUAL SYMPOSIUM 2006

Update: The Proceedings of the LDN WORLD Symposium 2006 are now published in the December 2007 issue of
Molecular Genetics and Metabolism

(Volume 92, Issue 4, Pages S1-S34, 287-378)


ANNUAL SYMPOSIUM 2005
Program and Abstracts (640kb .pdf file)

ANNUAL SYMPOSIUM 2004
Program


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Support Groups

North America

Hunter's Hope Foundation 
Contact: Jacque Waggoner
Phone: 716-860-6328
Email: jacque@huntershope.org
P.O. Box 201, 887 Attica-Gulf Road
Attica, NY 14127
Website http://www.huntershope.org 

ISMRD
International Advocate for
Glycoprotein Storage Diseases
(aka; International Society of
Mannosodosis & Related Diseases)
 
John Forman, President
Email: john.forman@xtra.co.nz
3291 Country Club Drive
Lakewood, CA 90712
Email: info@ismrd.org 
Website http://www.ismrd.org 

Mucolipidosis Type IV Foundation 
Rebecca Oberman, Executive Director
Email: roberman@ml4.org
3500 Piedmont Rd
Atlanta, GA 30305
Website http://www.ml4.org 

National MPS Society  
P.O. Box 14686 
Durham, NC 27709-4686, USA 
Ph: (919) 806-0101  Fax:  (919) 806-2055 
Email: info@mpssociety.org 
Website http://www.mpssociety.org/ 

National Niemann-Pick Disease Foundation
P.O. Box 49, 401 Madison Ave, Ste. B
Ft. Atkinson, WI 53538
Ph 877-287-3672 Fax 920-563-0931
Email: nnpdf@idcnet.com
Website http://www.nnpdf.org

National Tay-Sachs and Allied Diseases Association Inc  
2001 Beacon Street, Suite 204  
Brighton, MA 02135, USA 
Ph 800-906-8723  Fax 617-277-0134  
Email info@ntsad.org  
Website http://www.ntsad.org/ 

Batten Disease Support and Research Association  
Lance Johnston, Executive Director 
120 Humphries Dr., Suite 2 
Reynoldsburg, OH 43068, USA 
Ph 1-800-448-4570 
Email: bdsra1@bdsra.org 
Website http://www.bdsra.org/ 

Fabry Support and Information Group 
Jack Johnson, Founder 
108 NE 2nd Street, Suite C 
P.O. Box 510, Concordia, MO 64020, USA 
Ph (660) 463-1355   Fax (660) 463-1356 
Email Jack@Fabry.org  
Website http://www.fabry.org/FSIG.nsf/Pages2/HomePage 

National Gaucher Foundation 
2227 Idlewood Road, Suite 12 
Tucker, GA, 30084, USA 
Ph (800-504-3189) 
email  ngf@gaucherdisease.org 
Website http://www.gaucherdisease.org/ngfinfo.htm 

The Canadian Society for Mucopolysaccharide & Related Diseases, Inc. 
P O Box 30034, RPO Parkgate 
North Vancouver, BC V7H 2Y8, Canada 
Ph: (604) 924-5130/(800) 667-1846 
Fax: (604) 924-5131 
Email patty@mpssociety.ca 
Website http://www.mpssociety.ca 

Taryn's World 
An information site written for kids and their friends to help them understand genetic diseases and disabilities. 
Website http://www.tarynsworld.org  

Hide and Seek  
Contact: Stephanie Lyn
Stephanie@hideandseek.org
6475 Pacific Coast Highway, Suite 466
Long Beach, CA 90803
USA
877-621-1122
562-621-0022
Website http://www.hideandseek.org  

Australia

Lysosomal Diseases Australia 
Ms Sophie Lazenkas, Secretary 
Lysosomal Diseases Research Unit 
Women's and Children's Hospital, Adelaide 
Ph 08 8204 7393  Fax 08 8204 7100 
Email Slazenkas@medicine.adelaide.edu.au  
Website http://www.lda.org.au 

Australian MPS Society
Secretary, David Oliver 
17 Raphael Drive, Hornsby Heights, NSW 2077 
Ph 02 9477 2440
Email possumsnest@ozemail.com  
Website http://www.mpssociety.org.au 

Australian Battens Support Group 
Harry Partridge 
Level 4, 1 Chandos St,  
St. Leonards, NSW 2065 
Email Harry.partridge@partridge.com.au 
Website http://www.battens.org.au 

Fabry Support Group Australia Inc 
Megan Fookes (President) 
Email meganfookes@ozemail.com.au 

Britain

CLIMB - Children Living With Inherited Metabolic Diseases 
Climb Building 
176 Nantwich Road, Crewe
Cheshire CW2 6NG
UK
Ph UK (+44) (0) 845 241 2173   Fax 01270 250244 
Email enquiries@climb.org.uk 
Website http://www.climb.org.uk 

Batten Disease Family Association
Jan Sablitzky, Development Officer 
c/o Heather House, Heather Drive
Tadley
RG26 4QR
UK

Ph 115 965 4815
Email BDFA.info@btinternet.com

Batten Support & Research Trust 
Bob Adams 
16 Melbourne Street, Westham 
Weymouth, Dorset DT4 ONG
UK  
Email bobadams@bsrt.org.uk 
Website http://www.bsrt.org.uk

British MPS Society 
Christine Lavery, Director 
46 Woodside Rd 
Amersham, Bucks HP6 6AJ
UK
Ph 01494 434156  Fax 01494 434252 
Email mps@btconnect.com 
Website http://www.mpssociety.co.uk/index.htm 

Niemann-Pick Disease Group (UK)
Toni Mathieson
National Development Manager
11 Greenwood Close
Fatfield
Washington
NE38 8LR
ENGLAND
Ph 44 0 191 415 0693

Email niemann-pick@zetnet.co.uk
Website http://www.niemannpick.org.uk

International Pompe Association 
Kevin O'Donnell, Group leader 
2 Summerside Place 
Edinburgh, EH6 4PA, Scotland 
Ph 0131 554 2791 
Email kevin@pompe.org.uk 
Website  http://www.pompe.org.uk/ 
 

Europe 

Fabry International Network 
Megan Fookes, President
Dennis Pedersen, Vice President, Europe
Jack Johnson, Vice President, United States
Christine Lavery, Secretary
www.fabryintnetwork.com 

German MPS Society 
Rupert Mayer Strasse 13 63741  
Aschaffenburg 
Ph 06021/85 83 73
Fax 06021/85 83 72 
International Secretary Bettina Wildi Bettinawildi@aol.com 
Website http://mps.muc.dtag.de/ 

German NCL (Batten Disease) Society
NCL-Gruppe Deutschland e.V.
Wilhelm Rüter
Am Waldbach 23
32339 Espelkamp
Telefon 05771 3255
Website http://www.ncl-deutschland.de

Italian MPS Society 
National Office 
Via Savona 13 
20144 Milan, Italy 
Ph 02 8324 1292 
Website http://www.mucopolisaccaridosi.it 
Secretary, Anna Serafini 
Ph/Fax 0131 264149 
Email info@mucopolisaccaridosi.it

Vaincre Les Maladies Lysosomales 
9, place du 19 mars 62 
91 035 Evry Cedex, France 
Tel 01 60 91 75 00  Fax  01 69 36 93 50 
Email : vml@provnet.fr  
Website http://www.provnet.fr/vml/fr/accueil.htm 


New Zealand

Lysosomal Diseases New Zealand 
Jenny Noble
16 Woodleigh Place
Ohauiti, Tauranga
New Zealand
Secretary Treasurer
Lysosomal Diseases New Zealand
Board Member ISMRD
The International Advocate for Glycoprotein Storage Diseases
Ph +64 7 544-8868
Fax +64 7 544-8867
Email jenny.noble@xtra.co.nz
Web http://www.ldnz.org.nz
        http://www.ismrd.org

South America

SBMPS - Sociedade Brasileira de Mucopolissacaridoses 
Prof Josué Félix de Araújo - Coordenador Geral 
Quadra única nº 15 Jardim Eldorado 
IAPI - Salvador - BA CEP 40310-110 
Fone/Fax (71) 386-4079 
Email webmaster@mpsbrasil.cjb.net  
Website http://www.mpsbrasil.org.br
(Note: the website has information in Portuguese and English)