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

Danon Disease

Fabry Disease

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

Gaucher Disease

Glycogen Storage Diseases

Krabbe Disease

Leukodystrophies

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

Mucopolysaccharidosis (MPS)

Multiple Sulfatase Deficiency

Neuronal Ceroid Lipofuscinosis (Batten disease)

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

Salla disease

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