Tay-Sachs, Canavan and related genetic diseases

• National Tay-Sachs & Allied Diseases Association
  www.ntsad.org
  Sue R. Kahn, ED
  skahn@ntsad.org
  2001 Beacon Street, Suite 204, Boston, MA 02135
  800-906-8723
  617-277-0134

Alpha-mannosidosis and Aspartylglucosaminuria

• International Society for Mannosidosis & Related Diseases
  www.mannosidosis.org
  Mark Stark, VP
  Mark_Stark@amat.com
  20880 Canyon View Drive  Saratoga, CA  
  408-529-6637s

Cystinosis

• Cystinosis Foundation
  www.cystinosisfoundation.org
  Jean Hotz, President
  e-mail@cystinosis.com
  604 Vernon Street, Oakland, CA 94610
  888-631-1588
  559-222-7997
  
  
• Cystinosis Research Network
  www.cystinosis.org
  Christy Greeley, ED
  greeleycd@aol.com
  302 Whytegate Court, Lake Forest, IL 60045
  866-276-3669
  847-235-2773
  

Danon Disease

• Association for Glycogen Storage Disease
  www.agsdus.org
  maryc@agsdus.org
  PO Box 896, Durant, IA 52747

Fabry Disease

• Fabry Support and Information Group
  www.fabry.org
  Jack Johnson, Founder
  info@fabry.org
  PO Box 510, Concordia, MO 64020
  660-463-1355
  660-463-1356
  
  
• The Fabry Disease Foundation
  Jerry Walter
  jerry.walter@thefdf.org

Fucosidosis

• International Society for Mannosidosis and Related Diseases
  www.mannosidosis.org
  Mark Stark, VP
  info@ismrd.org
  20880 Canyon View Drive  Saratoga, CA  
  408-529-6637

Gaucher Disease

• Children's Gaucher Disease Research Fund
  www.childrensgaucher.org
  Gregory Macres, Founder and Chairman
  research@childrensgaucher.org
  PO Box 2123, Granite Bay, CA 95746
  916-797-3700
  916-797-3707
  
  
• National Gaucher FoundationÂ
  www.gaucherdisease.org
  Rhonda P. Buyers, ED
  rhonda@gaucherdisease.org
  2227 Idlewood Road, Suite 12, Tucker, GA 30084
  800-504-3189
  770-934-2911

Hide and Seek Foundation

• Hide and Seek Foundation for LDN Research
  www.hideandseek.org
  Stephanie Lyn
  Stephanie@hideandseek.org
  6475 Pacific Coast Highway, Suite 466
  Long Beach, CA 90803
  562-621-1122
  F: 562.621.0022

Krabbe disease

• Hunter's Hope Foundation
  www.huntershope.org
  PO Box 643, 
  Orchard Park, NY 14127
  877-984-4673 toll free

  716-667-1200
  716-667-1212 fax
  
  Jacque Waggoner (CEO)          
  jacque@huntershope.org
  
  
• The Project - The Children's Rare Disease Network
  www.theprojectcharity.org
  Nicole Boice, Founder
  info@theprojectcharity.org
  24338 El Toro Road, Suite E507, Laguna Woods, CA 92637
  949-305-8656

Mucolipidosis I (Sialidosis)

• International Society for Mannosidosis & Related Diseases
  www.mannosidosis.org
  Mark Stark, VP
  info@ismrd.org
  20880 Canyon View Drive  Saratoga, CA  
  408-529-6637

Mucolipidosis II/III (I-cell and pseudo-Hurler Polydystrophy)

• International Society for Mannosidosis & Related Diseases
  www.mannosidosis.org
  Mark Stark, VP
  info@ismrd.org
  20880 Canyon View Drive  Saratoga, CA  
  408-529-6637
  
  
• National MPS Society
  www.mpssociety.org
  Barbara Wedehase, ED
  barbara@mpssociety.org
  4220 Apex Highway, Suite 140 Durham, NC 27713
  919-806-0101
  919-806-2055

Mucolipidosis IV

• Mucolipidosis IV Foundation
  www.ml4.org
  Randy Yudenfriend, President
  www@ml4.org
  719 East 17th Street Brooklyn, New York 11230
  718-434-5067

Leukodystrophies

• Adrenoleukodystrophy Foundation
  www.aldfoundation.org
  David A. Cry
  President
  davidcry@aldfoundation.org
  Tulsa, OK 7413
  918-298-8542
  
  
• MLD Foundation
  www.mldfoundation.org
  Dean Suhr, President
  deansuhr@mldfoundation.org
  21345 Miles Drive, West, Linn, OR 97068
  800-617-8387
  503-212-0159
  
  
• United Leukodystrophy Foundation
  ulf.org
  Timothy R. Brazeal, ED
  office@ulf.org
  2304 Highland Drive, Sycamore, IL 60178
  800-728-5483
  815-895-2432

Mucopolysaccharidosis

• National Mucopolysaccharidoses (MPS) Society
  www.mpssociety.org
  Barbara Wedehase, MSW, CGC
  Executive Director
  barbara@mpssociety.org
  4220 Apex Highway, Suite 140
  Durham, NC 27713
  919-806-010
  919-806-2055

Niemann-Pick Disease

• National Niemann-Pick Disease Foundation
  www.nnpdf.org
  PO Box 49, Fort Atkinson, WI 53538
  920-563-0930
  920-563-0931
  
  
• The Ara Parseghian Medical Research Foundation
  www.parseghian.org
  3530 E. Campo Abierto, Suite 105, Tucson, AZ 85718
  520-577-5106
  520-577-5212
  
  Cindy Parseghian
  cparseghian@parseghian.org

Neuronal ceroid lipofuscinosis (Batten disease)

• Batten Disease Support and Research Association
  www.bdsra.org
  166 Humphries Drive, Reynoldsburg, OH 43068
  800-448-4570
  
  Lance Johnston, ED
  bdsra1@bdsra.org
  
  
• Nathan's Battle Foundation
  www.nathansbattle.com
  Phil Milto
  pmilto@indy.net
  459 State Road 135 South Greenwood, In. 46142
  317.888.7396
  317.888.0504

Pompe Disease

• Acid Maltase Deficiency Association
  www.amda-pompe.org
  Tiffany House, ED
  tiantama@aol.com
  PO Box 700248, San Antonio, TX 78270
  210-494-6144
  210-490-7161

Schindler disease

• International Society for Mannosidosis & Related Diseaseswww.mannosidosis.org
  Mark Stark, VP
  info@ismrd.org
  20880 Canyon View Drive  Saratoga, CA  
  408-529-6637

Wolman Disease

• Madisons Foundation
  www.madisonsfoundation.org
  Marcy Smith, ED
  getinfo@madisonsfoundation.org
  PO Box 241956, Los Angeles, CA 90024
  310-264-0826
  310-264-4766