Patient Organizations
All Lysosomal conditions
- ANGEL AID
773 Center Blvd, Suite 464
Fairfax, CA 94930
415-662-8450
social@nullangelaidcares.org
OR text SIGNS to 741741 for the Crisis Text Line
Services are free and available 24/7.
ANGEL AID is a nurturing and safe community for mothers of children with rare disease. We offer relief- a place to be listened to without judgment, create relationships with women who truly understand, and learn from our network of health and wellness experts. All of this at no charge. - Global Genes
Nicole Boice, Founder and CEO
nicoleb@nullglobalgenes.org - Lysosomal Diseases New Zealand
aka The New Zealand Lysosomal Storage Diseases Trust
John Forman, Chairperson
john.forman@nullxtra.co.nz - Lysosomal Storage Disorders Support Society (“LSDSS”) (in India)
Shashank Tyagi, National Coordinator
shashanktyagi@nulllsdss.org
contactus@nulllsdss.org - Rare Disorders NZ
Lisa Foster, Chief Executive
https://raredisorders.org.nz/contact-us/ - Quebec Coalition of Orphan Diseases
Jane Ricciardelli, COO
info@nullcanadahelps.org
Alpha-mannosidosis and Aspartylglucosaminuria
- International Society for Mannosidosis and Related Diseases
www.ismrd.org
Jackie James, President;
Jenny Noble, Vice President & Administrator
jenny.noble@nullxtra.co.nz
167 Hollister Lane,
Ohauiti, Tauranga, New Zealand
Phone: 64 7 5448868
Cystinosis
- The Cystinosis Foundation
www.cystinosisfoundation.org
Valerie Hotz, Executive Director
VHotz@nullcystinosis.com
58 Miramonte Drive
Moraga, CA 94556
888-631-1588 - Cystinosis Research Foundation
www.cystinosisresearch.org
Nancy Stack
nstack@nullcystinosisresearch.org
Stacy Johnson
info@nullcystinosisresearch.org
sjohnson@nullcystinosisresearch.org
19200 Von Karman Ave, Suite 920
Irvine, CA 92612
949-223-7610 - Cystinosis Research Network
www.cystinosis.org
Christy Greeley, Executive Director
info@nullcystinosis.org
302 Whytegate Court
Lake Forest, IL 60045
866-276-3669
847-235-2773
Danon Disease
- Association for Glycogen Storage Disease
www.agsdus.orgIris Ferrecchia, President
irisferrecchia@nullgmail.com
P.O. Box 896
Durant, IA 52747
563-514-4022
Fabry Disease
- The Canadian Fabry Association
www.fabrycanada.com
Donna Strauss, President
donna_strauss@nullhotmail.com
Julia Alton, Vice President, Executive Director
altonjulia@nullgmail.com
748 Kelly Street
Thunder Bay, ON
Canada P7E 2A1
807-252-6388 - Fabry Australia, Inc.
www.fabry.com.au
Megan Fookes, OAM, Managing Director
director@nullfabry.com.au
secretary@nullfabry.com.au
P.O. Box 106, Mentone
Victoria, Australia 3194
61 (0)422 201 013 - Fabry Support and Information Group
www.fabry.org
Jack Johnson, Executive Director
JJohnson@nullfabry.org
PO Box 510
Concordia, MO 64020
660-463-1355
660-463-1356 - The National Fabry Disease Foundation
www.fabrydisease.org
Jerry Walter, Founder and President
jerry.walter@nullfabrydisease.org
info@nullfabrydisease.org
4301 Connecticut Ave. NW, Suite 404
Washington, DC 20008
800-651-9131
919-732-2799
Fucosidosis
- International Society for Mannosidosis and Related Diseases
www.ismrd.org
Jackie James, President;
Jenny Noble, Vice President & Administrator
jenny.noble@nullxtra.co.nz
167 Hollister Lane,
Ohauiti, Tauranga, New Zealand
Phone: 64 7 5448868
Gangliosidoses
- Cure GM1 Foundation
www.curegm1.org
Christine Waggoner, Founder
christinewaggoner@nullhotmail.com
christine@nullcuregm1.org
P.O. Box 6890
Albany, CA 94706 - Cure Tay-Sachs Foundation
www.curetay-sachs.org
Rick Karl, President
lunchickm07@nullgmail.com
12730 Triskett Road
Cleveland, OH 44111
562-212-1071 - National Tay-Sachs and Allied Diseases Association (NTSAD)
www.ntsad.org
Susan Kahn, Executive Director
skahn@nullntsad.org
2001 Beacon Street, Suite 204
Boston, MA 02135
800-906-8723
617-277-0134 - New Hope Research Foundation
(for Adult-Onset Tay-Sachs disease)
www.newhoperesearch.org
Jack Keimel, President
jack.keimel@nullnewhoperesearch.org
6 Charley Lake Court
North Oaks, MN 55127-6219
763-526-8064
Gaucher Disease
- Children’s Gaucher Disease Research Fund
www.childrensgaucher.org
Gregory Macres, Founder and Chairman
research@nullchildrensgaucher.org
PO Box 2123
Granite Bay, CA 95746
916-797-3700
916-797-3707 - Gaucher Community Alliance
5255 Fair Oaks Street
Pittsburgh, PA 15217
www.gauchercommunity.org
info@nullgauchercommunity.org
Phone: 412-219-9188 - Gaucher & LSD Society of South Africa
Kelly du Plessis, Executive Director
k.duplessis@nullmweb.co.za - National Gaucher Foundation
www.gaucherdisease.org
Amy Blum, Chief Operating Officer
amy@nullgaucherdisease.org
Noreen Layne, Administrative and Development Assistant
noreen@nullgaucherdisease.org
5410 Edson Lane, Suite 220
Rockville, MD 20852
301-593-1452
800-504-3189 - National Gaucher Foundation of Canada
Christine White, President
christinewhite@nullgauchercanada.ca
christinewhite53@nullgmail.com
Glycogen Storage Diseases
- Association for Glycogen Storage Disease
www.agsdus.org
Iris Ferrecchia, President
irisferrecchia@nullgmail.com
P.O. Box 896
Durant, IA 52747
563-514-4022
Krabbe Disease
- Hunter’s Hope Foundation
www.huntershope.org
Jacque Waggoner, Chief Executive Officer
jacque@nullhuntershope.org
info@nullhuntershope.org
anna@nullhuntershope.org
6368 West Quaker Street
Orchard Park, NY 14127
877-984-4673 toll free
716-667-1200
716-667-1212 fax - KrabbeConnect
www.KrabbeConnect.org
Stacy Pike-Langenfeld, Co-Founder and President
stacy.pike@nullkrabbeconnect.org
Anne Rugari, Co-Founder and Vice-President
anne.rugari@nullkrabbeconnect.org
P.O. Box 2643
Rosemount, MN 55068-0264
651-252-4117 - The Legacy of Angels Foundation
(For Krabbe disease & cystic fibrosis)
www.tloaf.org
Paul Rosenau, President/Co-Founder
stacyluken@nullicloud.com
Stacy Pike-Langenfeld, Director of Programs and Administration
stacypike@nulltloaf.org
P.O. Box 1014
Prior Lake, MN 55372
612-387-3424
Leukodystrophies
- Adrenoleukodystrophy Foundation
www.aldfoundation.org
David A. Cry, CEO
information@nullaldfoundation.org
241 Camden Street
Slidell, LA 70461
985-718-4728 - Australasian Leukodystrophy Foundation
Bob Wyborn, President and Founder
BobWyborn@nullbigpond.com - Chloe’s Fight Rare Disease Foundation
(For metachromatic leukodystrophy)
www.chloesfight.org
Erica Barnes, Co-Founder and Chair of the Board of Directors
erica.barnes@nullrareaction.org
Erica.Barnes@nullrarediseases.org
ericademourebarnes@nullgmail.com
343 Sweet Briar Lane
Hopkins, MN 55343
952-457-6956 - MLD Foundation
(For metachromatic leukodystrophy)
www.mldfoundation.org
Teryn Suhr, Executive Director
teryn@nullmldfoundation.org
Dean Suhr, President & Board Chairperson
dean@nullmldfoundation.org
MLDinfo@nullmldfoundation.org
21345 Miles Drive,
West Linn, OR 97068
800-617-8387
503-656-4808 - MLD Support Association UK
(for metachromatic leukodystrophy)
Vivienne Clark, Chairperson
Jackie Imrie, Trustee
admin@nullmldsupportuk.org.uk - United Leukodystrophy Foundation
www.ulf.org
Bobbi Burgstone, Executive Director
bobbi@nullulf.org
224 North Second Street, Suite 2
DeKalb, IL 60115
800-728-5483 or (815) 748-3211
Fax: (815) 748-0844
Mucolipidosis I (Sialidosis)
- International Society for Mannosidosis and Related Diseases
www.ismrd.org
Jackie James, President;
Jenny Noble, Vice President & Administrator
jenny.noble@nullxtra.co.nz
167 Hollister Lane,
Ohauiti, Tauranga, New Zealand
Phone: 64 7 5448868
Mucolipidosis II/III (I-cell and pseudo-Hurler Polydystrophy)
- International Society for Mannosidosis and Related Diseases
www.ismrd.org
Jackie James, President;
Jenny Noble, Vice President & Administrator
jenny.noble@nullxtra.co.nz
167 Hollister Lane,
Ohauiti, Tauranga, New Zealand
Phone: 64 7 5448868
Mucolipidosis IV
- Mucolipidosis IV Foundation – ML4 Foundation
www.ml4.org
Rebecca Oberman, Ph.D., Executive Director
roberman@nullml4.org
info@nullml4.org
3500 Piedmont Road, Suite 500
Atlanta, GA 30305
404-510-2577
Mucopolysaccharidosis (MPS)
- Ben’s Dream
Sanfilippo Research Foundation
www.bensdream.org
Stuart & Jennifer Siedman
P.O. Box 81268
Wellesley, MA 02481-0002
617-899-4158 - The Canadian MPS Society (The Canadian Society for Mucopolysaccharide & Related Diseases Inc.)
www.mpssociety.ca
Kimberly D. Angel, Executive Director
kimangel@nullmpssociety.ca
#218-2055 Commercial Drive
Vancouver, BC V5N 0C7
Canada
1-800-667-1846 or 604-924-5130 - Cure Sanfilippo Foundation
www.curesff.org
Glenn O’Neill, President
curesff@nullgmail.com
Dr. Cara O’Neill, MD, Scientific Director
cara.curesff@nullgmail.com
P.O. Box 6901
Columbia, SC 29260
803-413-0525 - The Isaac Foundation
(For MPS diseases)
www.theisaacfoundation.com
Alexandra Hall, Managing Director; Policy, Patient Support, & Industry Liaison
alix@nulltheisaacfoundation.com
mcfadyena@nullme.com
5291 County Rd. 30
Campbellford, Ontario
Canada K0L 1L0
613-328-9136
Twitter: @isaacfoundation
YouTube: www.youtube.com/user/mcfadyena - Jonah’s Just Begun – Foundation to Cure Sanfilippo
www.jonahsjustbegun.org
Jeremy Weishaar, President
Jill Wood, Treasurer
P.O. Box 150057
Brooklyn, NY 11215 - National MPS Society
www.mpssociety.org
Terri Klein, President and CEO
Terri@nullmpssociety.org
1007 Slater Rd, Suite 220
Durham, NC 27703
919-806-0101
919-806-2055 - Project Alive
(for Hunter Syndrome)
www.projectalive.org
Melissa Hogan, JD, President
melissa.hogan@nullprojectalive.org
give@nullprojectalive.org
P.O. Box 384
Thompson’s Station, TN 37179
313-312-5483 - The Ryan Foundation
www.ryanfoundation.net/home
Mark Dant, Executive Director
info@nullryanfoundation.org
2025 Jackson Rd
Carrollton, Texas 75006-1739
214-870-7926 - The Sanfilippo Children’s Foundation
(an Australian PAG)
www.sanfilippo.org.au
Victoria Bowring, Chief Executive Officer
victoria.bowring@nullsanfilippo.org.au
P.O. Box 475, Freshwater
NSW 2096, Australia
1800 664 878 - Sanfilippo Foundation for Children
www.sf4k.org
Roy Zeighami, Executive Director/Founder
6420 Diamond Dr
Mckinney, TX 75070 - The Society for Mucopolysaccharide Diseases (UK)
Bob Stevens, Group Chief Executive
info@nullmpssociety.org.uk - Taiwan MPS Society
Virginia Tsai, Founder
tsaivirginia@nullyahoo.com.tw
Megan Sun, Co-Admin
taiwanmpssociety@nullgmail.com
Multiple Sulfatase Deficiency
- MSD Action Foundation
(for multiple sulfatase deficiency)
www.savingdylan/about-the-foundation.com
Alan Finglas
alanfinglas@nullgmail.com
MSD Action Foundation
c/o Grattan Lodge
Balgriffin, Dublin 13
Ireland - United MSD Foundation, Inc.
(for multiple sulfatase deficiency)
www.unitedmsdfoundation.com
Amber Olsen
WarriorsForWillow@nullgmail.com
aolsen@nullnextaff.com
2112 Bienville Blvd, Suite B2
Ocean Springs, MS 39564
228-327-6916
Neuronal Ceroid Lipofuscinosis (Batten disease)
- Batten Disease Support and Research Association
www.bdsra.org
Tracy Kirby, BDSRA Family Liaison
tkirby@nullbdsra.org
2780 Airport Dr, Suite 342
Columbus, OH 43219-2292
800-448-4570 - The Charlotte and Gwenyth Gray Foundation
www.curebatten.org
Kristen and Gordon Gray (the parents)
c/o The Giving Back Fund
curebatten@nullgivingback.org
graygirlsfoundation@nullgmail.com
5757 W. Century Blvd, Suite 410
Los Angeles, CA, 90045
310-649-5222 - Nathan’s Battle Foundation (for LINCL)
www.nathansbattle.com
Phil Milto, Executive Director
pmilto@nullindy.net
459 State Road 135
South Greenwood, IN 46142
317-888-7396
317-888-0504 - Taylor’s Tale
(Originally for Batten disease; now for all rare diseases)
www.taylorstale.org
Laura King Edwards, Co-founder and Vice President
laura@nulltaylorstale.org
Sharon King, President
sharon@nulltaylorstale.org
7804 Fairview Rd, Box 135
Charlotte, NC 28226-4998
Niemann-Pick Disease
- Addi & Cassi Fund
(For Niemann-Pick disease type C)
www.addiandcassi.com
Hugh Hempel and Chris Hempel
59 Damonte Ranch Parkway
Suite B360
Reno, NV 89511
800-517-2542 - The Ara Parseghian Medical Research Foundation
www.parseghianfund.nd.edu
Sean Kassen, Ph.D., Director of the Ara Parseghian Medical Research Fund at the University of Notre Dame
skassen@nullnd.edu
Ara Parseghian Medical Research Fund
University of Notre Dame
Office of the Dean
215 Jordan Hall of Science
Notre Dame, IN 46556-4618
574-631-4689 - Hide & Seek Foundation/SOAR
(For Niemann-Pick type C)
www.hideandseek.org
Jonathan Jacoby, President
6475 Pacific Coast Highway, Suite 466
Long Beach, CA 90803
844-762-7672 - National Niemann-Pick Disease Foundation
www.nnpdf.org
Joslyn Crowe, Executive Director
jcrowe@nullnnpdf.org
PO Box 49
Fort Atkinson, WI 53538
920-563-0930
877-287-3672 - Niemann-Pick UK (NPUK)
Toni Mathieson, Chief Executive
toni@nullnpuk.org - The Quinn Madeleine Foundation
www.quinnmadeleine.org
Eileen Linzer, Co-Founder and Executive Director
eileen.linzer@nullquinnmadeleine.org
PO Box 72
Lynbrook, NY 11563
516-206-2155
Pompe Disease
- Acid Maltase Deficiency Association
www.amda-pompe.org
Tiffany House, AMDA President
TiffanyLHouse@nullaol.com
PO Box 700248
San Antonio, TX 78270
210-494-6144
210-490-7161 - Australian Pompe’s Association, Inc.
www.australianpompe.org
Raymond Saich, President
RSaich@nullbigpond.net.au
8 Follett Rd
Cheltenham, Victoria 3192
Australia - Canadian Association of Pompe,
a.k.a. Association Canadienne de Pompe
www.pompecanada.com
Brad Crittenden, President
brad@nullpompecanada.com
112-3201 Wilson Street
Penticton, BC
Canada V2A 8J3 - United Pompe Foundation
David W. Hamlin
david@nullunitedpompe.com
Salla disease
- Salla Treatment and Research Foundation
Jessica Klein-Foglio, President
jessica@nullstarforben.org
Michael Foglio
mike@nullstarforben.org
Schindler disease
- International Society for Mannosidosis and Related Diseases
www.ismrd.org
Jackie James, President;
Jenny Noble, Vice President & Administrator
jenny.noble@nullxtra.co.nz
167 Hollister Lane,
Ohauiti, Tauranga, New Zealand
Phone: 64 7 5448868
Wolman Disease
- LAL Solace
www.lalsolace.org
Brett Billmeyer, Executive Director
Mnwild11@nullaol.com
11478 Sawmill Curve
Woodbury, MN 55129