KERNICTERUS

Parents of Infants and Children with Kernicterus (PICK)

517 Brentwood Dr.

Birmingham, AL 35226

Contact: Karen Dixon

(205) 979-2021

ktdixon1@home.com

http://www.bilirubin.net

 

KIDNEY DISEASE, HEREDITARY

Hereditary Nephritis Foundation

1390 W. 6690 S. #202H

Murray, U 84123

(801) 262-5901 (phone/fax)

http://www.cc.utah.edu/~cla6202/HNF.htm

-Urologic Disorders

-Alport Syndrome

KIDNEY DISORDERS

American Association of Kidney Patients

106 S. Ashley Dr., Ste. 315

Tampa, FL 33602

(800) 749-2257

(813) 636-8122

(813) 223-0001 (fax)

info@aakp.org

http://www.aakp.org

American Kidney Fund

6110 Executive Blvd., Ste. 1010

Rockville, MD 20852

(800) 638-8299

(301) 881-3052

(301) 881-0898 (fax)

helpline@akfinc.org

http://www.akfinc.org

Child & Youth Clinical Trials Network (CYCTN)

Spencer Russ, Acting Director

Cheo-Research Institute

401 Smith Rd.

Ottawa, ON

CAN K1H 8L1

(613) 737-4098

(613) 738-4800 (fax)

Kidney Foundation of Canada

300-5165 Sherbrooke St. W.

Montreal, QC

CAN H4A IT6

(514) 369-4806

(514) 369-2472 (fax)

kathleen@kidney.ca

http://www.kidney.ca

National Kidney Foundation

30 E. 33rd St., Ste. 1100

New York, NY 10016

(800) 622-9010

(212) 889-2210

(212) 689-9261 (fax)

http://www.kidney.org

PKD Foundation

Dave Switzer, Marketing/Public Relations Director

4901 Main St., Ste. 200

Kansas City, MO 64112-2634

(800) 753-2873

(816) 931-8655 (fax)

pkdcure@.pkdcure.org

http://www.pkdcure.org

-Urologic Disorders

-Alstrom Syndrome

KLINEFELTER SYNDROME

49 XXXXY Syndrome Association

10001 NE 74th St.

Vancouver, WA 98662-3801

(360) 892-7547

kimbj@juno.com

Klinefelter's Syndrome Association, Inc. 47, XXX and 47, XYY

PO Box 2119

Loomis, CA 95650

(916) 660-1599

(888) 999-9428 (toll free line)

(916) 660-1899 (fax)

info@genetic

http://www.genetic.org

Klinefelter's Syndrome Association of America

N5879 30th Rd.

Pine River, WI 54965

(920) 987-5782

-Sex Chromosome Disorders, Male

-47, XYY; 47, XXY; 47, XXX Syndromes

KLIPPEL-TRENAUNAY SYNDROME

Klippel-Trenaunay Support Group

c/o Judy Vessey

5404 Dundee Rd.

Edina, MN 55436

(652) 925-2596

jvessey@qwest.net

http://www.k-t.org

-Krabbe Disease

-Vascular Malformations

LACTIC ACIDOSIS

Congenital Lactic Acidosis Family Support Group

1620 Mable Ave.

Denver, CO 80229

(303) 287-4953

-Alaninuria

LATEX ALLERGY

Latex Allergy Information Service

176 Roosevelt Ave.

Torrington, CT 06790

(860) 482-6869

(860) 482-2294 (fax)

debilan1@cs.com

http://www.latexallergyhelp.com

-Allergy

-Allergy, Latex

LAURENCE-MOON-BARDET-BIEDL SYNDROME (LMBBS)

Laurence-Moon-Bardet-Biedl Syndrome Network (LMBBS)

11435 Crowhill Dr.

Owings Mills, MD 21117

(888) 394-3937 (toll free)

(800) 683-5551 (TDD)

(410) 569-0150

(410) 771-9470 (fax)

Attention: Ridia Anderson

Mmarzullo@blindness.org

http://www.blindness.org

-Adipogenital-Retinitis Pigmentosa-

Polydactyly Syndrome

LEARNING DISABILITIES

Learning Disabilities Association of America

Jane Browning

Executive Director

4156 Library Rd.

Pittsburgh, PA 15234

(412) 341-1515

(412) 344-0224 (fax)

linfo@ldaamerica.org

http://www.ldanatl.org

The Learning Disabilities Association of Canada (National Office)

323 Chapel St.

Ottawa, ON

CAN K1N 7Z2

(613) 238-5721

(613) 235-5391 (fax)

information@ldac-taac.ca

http://www.ldac-taac.ca

Learning Disabilities Association of New York city

27 W. 20 St., Rm 303

New York, NY 10011

(212) 645-6730

(212) 924-8896 (fax)

lldanyc@earthlink.net

National Center for Learning Disabilities

Pazit Algazi Communications

Marketing Coordinator

381 Park Ave. S, Ste 1401

New York, NY 10016

(212) 545-7510

(212) 545-9665 (fax)

http://www.ld.org

Parents of Gifted/LD Students

2420 Eccleston St.

Silver Spring, MD 20902-4925

(301) 986-1422

(301) 924-9304 (fax)

jilmeyers@aol.com

http://www.geocities.com/athens/1105/gtld.htm

Resource for Children with Special Needs, Inc.

116 E. 16th St., 5th Fl.

New York, NY 10003

(212) 677-4650

(212) 254-4020 (fax)

info@resourcesnyc.org

http://resourcesnyc.org

 

LESCH-NYHAN DISEASE

International Lesch-Nyhan Disease Association

11042 Ferndale St.

Philadelphia, PA 19116

(215) 677-4206

International Lesch-Nyhan Disease Registry

Matheny School and Hospital Institute for Research in Developmental Disabilities

PO Box 339

Peapack, NJ 07077

(908) 234-0719

(908) 234-0963 (fax)

research@matheny.org

http://www.matheny.org

Lesch-Nyhan Registry

Dept. of Psychiatry

New York Univ. School of Medicine

550 First Ave.

New York, NY 10016

(212) 263-6458

(212) 629-9523 (fax)

andersnl@is2.nyu.edu

 

LEUKEMIA

Leukemia Research Fund of Canada

Attn: Maureen E. Thornton

936 The East Mall

Toronto, ON

CAN M9B 6J9

(800) 268-2144 (Canada only)

(416) 661-2875

(416) 661-3840 (fax)

lrfc@lrfc.org

http://www.leukemia.ca

Leukemia & Lymphoma Society

1311 Marnaroneck Ave., 3rd Fl.

White Plains, NY 10605

(800) 955-4572

(914) 949-5213

(914) 949- 6691 (fax)

http://www.leukemia-lymphoma.org

 

LEUKODYSTROPHY

United Leukodystrophy Foundation

2304 Highland Dr.

Sycamore, IL 60178

(800) 728-5483

(815) 895-3211

(815) 895-2432 (fax)

ulf@tbcnet.com

http://www.ulf.org

-Adrenoleukodystrophy

-Zellweger Syndrome

-White Matter Disorders

-Sulfatidosis, Juvenile, Austin Type

LIMB DISORDERS

Superkids

Peter McLoughlin

60 Clyde St.

Newton, MA 02460-2250

http://www.super-kids.org

 

LIPOMYELOMENINGOCELE

Lipomyelomeningocele Family Support Network

321 Hopewell St.

Birdsboro, PA 19508

(610) 582-5937

gmcafee@ptd.net

http://www.home.ptd.net/~ifsn

 

LISSENCEPHALY

Lissencephaly Network, Inc.

10408 Bitterroot Ct.

Fort wayne, IN 46804

(219) 432-4310 (voice/fax)

lta1@is2.nyu.edu

http://www.lissencephaly.org

The Lissencephaly Network, In.--Canada Division

1549 Regent St.

Regina, SK

CAN S4N 1S1

(219) 432-4310

http://www.lissencephaly.org

-Agyria

-Warburg Syndrome

-Walker-Warburg Syndrome

LIVER DISEASE AND TRANSPLANT (PEDIATRICS)

Children's Liver Alliance (formerly the Biliary Atresia & Liver Transplant Network, BALT)

3835 Richmond Ave., Box 190

Staten Island, NY 10312-3828

(718) 987-6200 (voice/fax)

Livers4Kids@earthlink.net

http://www.livertx.org

 

LIVER DISORDERS

American Liver Foundation

75 Maiden Ln., Ste. 603

New York, NY 10038-4810

(800) 223-0179

(800) GO-LIVER (465-4837)

(888) 4-HEP-ABC (443-7222)

(212) 668-1000

(212) 483-8179 (fax)

webmail@liverfoundation.org

http://www.liverfoundation.org

Canadian Liver Foundation

2235 Sheppard Ave. E.,

Ste. 1500

Toronto, ON

CAN M2J 585

(800) 563-5483 (Canada only)

(416) 491-3353

(416) 491-4952 (fax)

clf@liver.ca

http://www.liver.ca

-South African Genetic Porphyria

LONG Q-T SYNDROME

International Long Q-T Syndrome Registry

Jennifer Robinson

University of Rochester Med Ctr, Box 653

Rochester, NY 14642-8653

(716) 275-5391

(716) 473-2751 (fax)

http://www.longqt.org/longqtreg.html

Sudden Arrhythmia Death Syndromes (SADS) Foundation

508 E. South Temple, Ste. 20

Salt Lake city, UT 84102

(800) 786-7723

(801) 531-0945 (fax)

sads@sads.org

http://www.sads.org

-Surdicardiac Syndrome

LOWE SYNDROME

Lowe Syndrome Association

222 Lincoln St.

W. Lafayette, IN 47906

(765) 743-3634

info@lowesyndrome.org

http://www.lowesyndrome.org

 

LUNG DISEASES

American Lung Association

61 Broadway, 6th Fl.

New York, NY 10006

(800) LUNG-USA (586-4872)

(212) 315-8700

(212) 265-5642 (fax)

(212) 315-8872 (fax)

info@lungusa.org

http://www.lungusa.org

Canadian Lung Association

Attn: Deirdre Freiheit

3 Raymond St Ste 300

Ottawa, ON

CAN K1R 1A3

(613) 564-6411

(613) 747-7430 (fax)

info@lung.ca

http://www.lung.ca

 

LUPUS ERYTHEMATOSIS

Lupus Foundation of America

Duane Peters, Communications and Advocacy

1300 Piccard Dr., Ste. 200

Rockville, MD 20850

(888) 385-8787

(301) 670-9292

(301) 670-9486 (fax)

info@lupus.org

http://www.lupus.org

SLE Foundation

149 Madison Ave., Ste. 205

New York, NY 10016

(212) 685-4118

(212) 545-1843 (fax)

lupus@lupusny.org

http://www.lupusny.org

Lupus Canada

8 Crown Steel Dr., Ste. 209

Markham ON

Canada L3R 9X8

(905) 513-0004

(905) 513-9516 (fax)

lupuscanada@bellnet.ca

http://www.lupuscanada.org

 

LYME DISEASE

American Lyme Disease Foundation, Inc.

Mill Pond Offices

293 Rt. 100

Somers, NY 10589

(914) 277-6970

(914) 277-6974 (fax)

inquire@aldf.com

http://www.aldf.com

Lyme Disease Foundation

1 Financial Plaza, Gold Bldg., 18th Fl.

Hartford, CT 06103-2610

(800) 886-5953 (info line)

(860) 525-2000

(860) 525-8425 (voice/fax)

lymeffnd@aol.com

http://www.lyme.org

Lyme Disease Resource Center

PO Box 1423

Ukiah, CA 95482

(707) 468-8460

pcm@pacific.net

 

LYMPHANGIOMA

AboutFace International

123 Edwards St. Ste 1003

Toronto, ON

CAN M5G 1E2

(800) 665-3223

(416) 597-2229

(416) 944-2488 (fax)

abtface@interlog.com

http://www.interlog.com/abtface

 

LYMPHEDEMA

NAT'L LYMPHEDEMA NETWORK

Saskia R.J. Thiadens, RN

Executive Director

1611 Telegraph Ave., Ste. 1111

Oakland, CA 94612-2138

(510) 208-3200

(510) 208-3110 (fax)

nln@lymphnet.org

http://www.lymphnet.org

 

MACULAR DISEASES

Association for Macular Diseases

210 E. 64th St.

New York, NY 10021

(212) 605-3777

(212) 605-3795 (fax)

macula@macula.org

http://www.macula.org

Macular Degeneration Foundation

PO Box 9752

San Jose, CA 95157

(888) 633-3937

(408) 260-1335

(409) 260-1336

eyesight@eyesight.org

http://www.eyesight.org

Stargardt Macular Dystrophy and Other Juvenile Macular Dystrophies Self Help Network

Macular Degeneration International

6700 N. Oracle Rd. Ste. 505

Tucson, AZ 85704

(800) 393-7634

(520) 797-2525

(520) 797-8018 (fax)

info@maculardegeneration.org

http://www.macular-degeneration.org

-Stargardt Disease

MALIGNANT HYPERTHERMIA

Malignant Hyprthermia Association

Carole Elliott, Administrator

200 Elizabeth St., Rm EC11-307

CCRW, Rm. 2-834

Toronto, ON

CAN M5G 2C4

(416) 340-3238

(416) 340-4960 (fax)

carole.elliott@uhn.on.ca

http://www.mhacanada.org

Malignant Hyperthemia Association of the United States

39 E. State St.

PO Box 1069

Sherburne, NY 13460

(800) 644-9737

(607) 674-7901

(800) 674-7910 (fax)

mhaus@norwich.net

http://www.mhaus.org

-Succiylcholine Sensitivity

MAPLE SYRUP URINE DISEASE

Maple Syrup Urine Disease

Family support Group

Joyce Brubacher

24806 SR 119

Goshen, IN 46526

(574) 862-2992

msud-support@characterlink.net

http://www.msud-support.org

 

MARFAN SYNDROME

Canadian Marfan Association

Laura Libralesso Executive Director

Centre Plaza Postal Outlet

128 Queen St., S.

PO Box 42257

Mississauga, ON

Canada L5M 4ZO

(905) 826-3223

(905) 826-2125 (fax)

info@marfan.ca

http://www.marfan.ca

National Marfan Foundation

382 Main St.

Port Washington, NY 11050-3121

(800) 8MARFAN (862-7326)

(516) 883-8712

(516) 883-8040 (fax)

staff@marfan.org

http://www.marfan.org

 

MAST CELL DISEASE, SYSTEMIC

Mastocytosis Society

433 E. 300 S.

Spanish Fork, UT 84660-2147

(801) 798-2032

(801) 794-2980 (fax)

cybermorn@uswest.net

BillA@Mastocytosis.com

http://www.mastocytosis.com

-Urticaria Pigmentosa

-Systematic Mat Cell Disease

MCCUNE-ALBRIGHT SYNDROME

MAGIC Foundation

McCune-Albright Syndrome Division

6645 W. North Ave.

Oak Park, IL 60302

(800) 362-4423

(708) 383-0808

(708) 383-0899 (fax)

mary@magicfoundation.org

http://www.magicfoundation.org

 

MENKES DISEASE

Corporation for Menkes Disease

5720 Buckfield Ct.

Fort Wayne, IN 46804

(219) 436-0137 (phone/fax)

-Trichopoliodystrophy

-Stengel Hair Disease

MENTAL ILLNESS

Canadian Mental Health Association

2160 Yonge St.

Toronto, ON

CAN M4S 2Z3

(416) 484-7750

(416) 484-4617 (fax)

cmhanat@interlog.com

http://www.cmha.ca

Family Network on Disabilities of Florida, Inc.

Jan LaBelle, Executive Director

2735 Whitney Rd.

Clearwater, FL 33760

(813) 523-1130

(813) 523-8687 (fax)

fnd@fndfl.org

http://www.fndfl.org

Federation of Families for Children's Mental Health

Barbara Huff, Executive Director

1101 King St., Ste. 420

Alexandria, VA 22314

(703) 684-7710

(703) 836-1040 (fax)

ffcmh@ffcmh.org

http://www.ffcmh.org

Mental Health Association of Colorado

6795 E. Tennessee Ave., Ste. 425

Denver, CO 80224

(303) 377-3040

(303) 377-4920 (fax)

http://www.MHAcolorado.org

National Alliance for the Mentally Ill

Colonial Pl. Three

2107 Wilson Blvd., Ste. 300

Arlington, VA 222201

(703) 524-7600

(703) 524-9094 (fax)

NAMIOFFC@aol.com

http://www.nami.org

National Mental Health Association

2001 Beauregard St., 12th Fl.

Alexandria, VA 22311

(800) 969-6642

(703) 684-5968 (fax)

infoctr@nmha.org

http://www.nmha.org

National Mental Health Services

Knowledge Exchange Network (KEN)

PO Box 42490

Washington, DC 20015

(800) 789-2647

(301) 984-8796 (fax)

ken@mentalhealth.org

http://www.mentalhealth.org

Parents & Children Coping Together-PACCT

PO Box 26691

Richmond, VA 23261-6691

(800) 477-0946

(804) 559-6833

(804) 559-6835 (fax)

pacct@richmond.infi.net

The Parent Connection

PO Box O

Santa Fe, TX 77510

(800) 839-8876

(409) 756-8321

(409) 925-7773 (fax)

Utah Parent Center

2290 E. 4500 S., Ste. 110

Salt Lake City, UT 84117

(800) 468-1160 (UT only)

(801) 272-1051

(801) 272-8907 (fax)

upc@inconnect.com

 

MENTAL RETARDATION

The Arc of the United States

1010 Wayne Ave., Ste. 650

Silver Spring, MD 20910

(800) 433-5255

(301) 565-3842

(301) 565-3943 (fax)

info@thearc.org

http://www.TheArc.org/

Bethphage-Dallas

Michelle M. Lynch, Habilitative Specialist/Case Manager

2245 Midway Rd., #300

Carrolton, TX 75006

(972) 866-9989

(972) 991-0834 (fax)

donahue@bethphage.org

http://www.bethphage.org

Bethphage

The Lind Center, Ste. A.

4980 S 118th St.

Omaha, NE 68137-2220

(402) 896-3884

(402) 896-1511 (fax)

mburke@bethphage.org

http://www.bethphage.org

The Roeher Institute

Roslyn Ward, Manager, Information Services

Kinsmen Bldg., York University, 4700 Keele St.

Toronto, ON

CAN M3J 9611

(416) 661-9611

(416) 5701 (fax)

info@roeher.ca

http://www.cacl.ca

People First International

PO Box 12642

Salem, OR 97309

(503) 362-0336

(503) 587-8459 (fax)

heathd@open.org

http://www.people1.org

Voice of the Retarded

5005 Newport Dr., Ste. 108

Rolling Meadows, IL 60008

(847) 253-6020

(847) 253-6054 (fax)

vor@compuserve.com

http://www.vor.net

-X-Linked Alpha Thalassemia

MENTAL RETARDATION/MENTAL ILLNESS

(AAMR) American Association on Mental Retardation

444 N Capitol St., Ste. 846

Washington, DC 20001

(800) 424-3688

(202) 387-1968

(202) 387-2193 (fax)

anam@aamr.org

http://www.aamr.org

Developmental Disabilities Nurses Association (DDNA)

1733 H St., Ste. 330

PMB 1214

Blaine, WA 98230

(800) 888-6733

(360) 322-2280 (fax)

ddnahq@aol.com

http://www.ddna.org

National Association of the Dually Diagnosed (NADD)

132 Fair St.

Kingston, NY 12401

(800) 331-5362

(845) 331-4336

(845) 331-4569 (fax)

thenadd@aol.com

http://www.thenadd.org

 

METABOLIC DISORDERS

Climb

The Quadrangle Crewe Hall Climb Bldg.

176 Nantwich Rd.

Crewe, CW2 6BG UK

(44) 870700326

info@climb.org.uk

http://www.climb.org.uk

The World Life Foundation

PO Box 571

Bedford, TX 76095-0571

(800) 289-5433

(817) 285-0216 (fax)

loubaum@airmail.net

 

MICROCEPHALY

FACES-The National Craniofacial Association

PO Box 11082

Chattanooga, TN 37401

(800) 332-2373

(423) 26601632

(423) 267-3124 (fax)

Faces@mindspring.com

http://www.faces-cranio.org

Genetic Alliance

4301 Connecticut Ave. NW, Ste. 404

Washington, DC 20008-2304

(202) 966-5557

(202) 966-8553 (fax)

(800) 336-GENE (4363) helpline

info@geneticalliance.org

http://www.geneticalliance.org

March of Dimes Birth Defects Foundation

233 park Ave. S

New York, NY 10003

(212) 353-8353

(212) 254-3518 (fax)

NY639@modimes.org

http://www.modimes.org

National Institute of Neurological Disorders & Strike (NIDS)

PO Box 5801

Bethesda, MD 20824

(800) 352-9424

(301) 468-5981

braininfo@ninds.nih.gov

http://www.ninds.nih.gov

 

MITOCHONDRIAL DISORDERS

United Mitochondrial Disease Foundation

Dr. Georgette H. Demes

8085 Saltsburg Rd., Ste. 201

Pittsburgh, PA 15239

(412) 793-8077

(412) 793-6477 (fax)

info@umdf.org

http://www.umdf.org

Muscular Dystrophy Association

Bob Mackle: Director of Public Information

3300 E. Sunrise Dr.

Tucson, AZ 85718-3208

(800) 572-1717

(520) 529-5300 (fax)

mda@mdausa.org

http://www.mdausa.org

http://www.mdaenespanol.org

Muscular Dystrophy Family Foundation, Inc.

2330 N. Meridian St.

Indianapolis, IN 46208-5730

(800) 544-1213

(317) 923-MDFF (6333)

(317) 923-6334 (fax)

mdff@mdff.org

http://www.mdff.org

 

MOEBIUS SYNDROME

The Moebius Syndrome Foundation

PO Box 147

Pilot Grove, Mo 65276-0147

(660) 834-3406

(660) 834-3407 (fax)

vmccarrell@mid.mo-net

http://www.moebiussyndrome.cam

The Moebius Syndrome News

PO Box 20354

Oakland, CA 94620-0354

(510) 835-1318

moebiusca@aol.com

Moebius Syndrome Support Group

38883 Fox Holm Dr.

Palmdale, CA 93551

(805) 267-2570 (voice/fax)

lorit@netport.com

http://www.wincom.net/moebius

 

MUCOLIPIDOSIS TYPE IV

ML4 Foundation

719 East 17th St.

Brooklyn, NY 11230

(718) 434-5067

(718) 859-7371 (fax)

ml4@aol.com

http://www.ml4.org

-Sialolipidosis

MUCOPOLYSACCHARIDOSIS

The National Mucopoly-saccharidosis (MPS) Society

45 Packard Dr.

Bangor, Me 04401

(207) 947-1445

(207) 990-3074 (fax)

info@mpssociety.org

http://www.mpssociety.org

Little People of America

National Headquarters

Box 745

Lubbock, Texas 79408

(888) LPA-2001 (572-2001)

(voice/fax; call first)

(806) 797-8830 (voice/fax; call first) Engl./Span

LPADataBase@juno.com

http://www.lpaonlinee.org

-Sly Syndome

-Sialidosis

MULTIPLE ENDOCRINE NEOPLASIA I

Multiple Endocrine Neoplasia I

Mrs. Cathy McMillan-Fitch

Box 100

Meota, SK

CAN S0M 1X0

(306) 892-208-2080 (voice/fax)

hockey_freak99@hotmail.com

http://www.mensociety.com

-Acromegaly

MULTIPLE SCLEROSIS

Multiple Sclerosis Society of Canada

250 Bloor St. E, Ste. 1000

Toront, ON

CAN M4W 3P9

(800) 268-7582 (nearest division office)

(416) 922-6065

(416) 922-7238 (fax)

info@mssociety.ca

http://www.mssociety.ca

National Multiple Sclerosis Society

733 3rd Ave., 6th Fl.

New York, NY 10017-3288

(800) 344-4867

(212) 986-3240

(212) 986-7981 (fax)

nat@nmss.org

http://www.nmss.org

 

MUSCULAR DYSTROPHY

Parent Project Muscular Dystrophy

Pat Furlong, President

1012 N. University Blvd

Middletown, OH 45042

(800) 714-KIDS (5437)

(513) 424-0696

(513) 425-9907 (fax)

pat@parentprojectmd.org

http://www.parentdmd.org

-Tarui Disease

MUSCULAR DYSTROPHY

Muscular Dystrophy Association

Bob Mackle, Director of Public Information

3300 E. Sunrise Dr.

Tucson, AZ 85718-3208

(800) 572-1717

(520) 529-5300 (fax)

mda@mdausa.org

http://www.mdaenespanol.org

Muscular Dystrophy Association of Canada

2345 Yonge St., Ste. 901

Toronto, ON

CAN M4P 2E5

(800) 567-2873 (Canada only)

(416) 488-2699 ext. 160

(416) 488-0107 (fax)

motter@mdac.ca

http://www.mdac.ca

Muscular Dystrophy Family Foundation Inc.

Judith Duncan, President & CEO

Beth Allison, Director of Social Services

2330 N. Meridian St.

Indianapolis, IN 46208-5730

(800) 544-1213

(317) 923-6334 (FAX)

mdff@mdff.org

http://www.mdff.org

Society for Muscular Dystrophy Information International

PO Box 479

Bridgewater, NS

CAN B4V 2X6

(902) 685-3961

(902) 685-3962 (fax)

smdi@aura.com

http://www.auracom.com/~smidi/index.html

-X-Linked Myotublar Myopathy

MYASTHENIA GRAVIS

Myasthenia Gravis Foundation of America, Inc.

Debora K. Boelz CEO

5841 Cedar Lake Rd., Stte. 204

Minneapolis, MN 55416

(800) 541-5454

(952) 646-2028 (fax)

myastheniagravis@msn.com

http://www.myasthenia.org

 

MYELIN DISORDERS

The Canadian Myelin Research Initiative

c/o Julie and Wayne Simmons

4330 Spinningdale Ct.

Mississauga, ON

CAN L5M 3J8

(905) 567-8843

(905) 567-9189 (fax)

myelin@interlog.com

The Myelin Messenger

7320 N. Stable Ln.

Prescott, AZ 86305

(520) 776-7556

 

MYELOMA

International Myeloma Foundation

12650 Riverside Dr., Ste. 206

North Hollywood, CA 91607

(800) 452-2873

(818) 487-7455

(818) 487-7454 (fax)

theimf@myeloma.org

http://www.myeloma.org

 

MYOCLONUS

Myoclunus Families United

155 E. 35th St.

Brooklyn, NY11234

(718) 252-2133

Myoclonus Research Foundation

200 Old Palisade Rd., Ste. 17D

Fort Lee, NJ 07024

(201) 585-0770

http://www.myoclonus.com

 

MYOSITIS

National Myositis Association

7720B El Camino Real, Ste. 367

Rancho La costa, CA 92009

(800) 230-0441

(619) 436-2185

 

MYOTUBULAR MYOPATHY, X-LINKED

Myotubular Myopathy Resource Group

2602 Quaker Dr.

Texas City, TX 77590

(409) 945-8569

gscoggin@aol.com

http://www.mtmrg.org

-X-Linked Myotubular Myopathy