The Autoimmune Connection: Essential Information for Women on Diagnosis, Treatment, and Getting On With Your Life (58 page)

Appendix A
Where to Go for Help—Information and Support Groups
Autoimmune Diseases

American Autoimmune Related Diseases Association, Inc.

National Office

22100 Gratiot Ave.

Eastpointe, MI 48021

(586) 776-3900

(586) 776-3903 (fax)

(800) 598-4668

www.aarda.org

National Coalition of Autoimmune Patient Groups (NCAPG)

The NCAPG was founded and is facilitated by AARDA.

NCAPG members’ individual websites:

American Behcet’s Disease Association

www.behcets.com

American Vitiligo Research Foundation

www.avrf.org/

APS Foundation of America

www.apsfa.org/

Arthritis Foundation

www.arthritis.org/

Celiac Disease Foundation

https://
celiac.org/

Celiac Support Association

www.csaceliacs.org/

Coalition for Pulmonary Fibrosis

www.coalitionforpf.org/

Crohn’s and Colitis Foundation of America

www.ccfa.org/

Dysautonomia International

www.dysautonomiainternational.org/

Endometriosis Association

www.endometriosisassn.org/

Gluten Intolerance Group

www.gluten.org/

Graves’ Disease & Thyroid Foundation

www.gdatf.org/

Immune Deficiency Foundation

http://
primaryimmune.org/

International Foundation for Autoimmune Arthritis

www.ifautoimmunearthritis.org/

International Pemphigus & Pemphigoid Foundation

www.pemphigus.org/

Lupus Foundation of America

www.lupus.org/

Lupus and Allied Diseases Association

www.nolupus.org/

Myasthenia Gravis Foundation of America

www.myasthenia.org/

Myasthenia Gravis Foundation of Illinois

www.myastheniagravis.org/

National Adrenal Diseases Foundation

www.nadf.us/

National Alopecia Areata Foundation

www.naaf.org/

National Foundation for Celiac Awareness

www.celiaccentral.org/

National Kidney Foundation

www.kidney.org/

National Multiple Sclerosis Society

www.nationalmssociety.org/

National Psoriasis Foundation

www.psoriasis.org/

National Sleep Foundation

http://
sleepfoundation.org/

PANDAS Network.org

Pediatric Autoimmune Neuropsychiatric Disorders

http://
pandasnetwork.org/

Platelet Disorder Support Association

www.pdsa.org/

Relapsing Polychondritis Awareness and Support Foundation, Inc.

www.polychondritis.org/

Scleroderma Foundation

www.scleroderma.org/

Sjögren’s Syndrome Foundation

www.sjogrens.org/

The Myositis Association

www.myositis.org/

Transverse Myelitis Association

http://
myelitis.org/

U.S. Pain Foundation, Inc.

www.uspainfoundation.org/

Vasculitis Foundation

www.vasculitisfoundation.org/

Vitiligo Support International

www.vitiligosupport.org/

Autoimmune Disease Centers

Johns Hopkins Autoimmune Disease Research Center

Ross Building, Room 659

School of Medicine, Pathology Department

720 Rutland Avenue

Baltimore, MD 21205

http://
autoimmune.pathology.jhmi.edu

Barbara Volcker Center for Women & Rheumatic Diseases

The Hospital for Special Surgery

535 East 70th Street

New York, NY 10021

(212) 606-1461 or (212) 774-2291

Fax: (212) 774-2374

www.hss.edu/
barbara-
volcker.asp

E-mail:
[email protected]

The Arthritis Center

Boston University Medical Center

72 East Concord Street, Evans 501

Boston, MA 02118

(617) 638-4312, Clinic (617) 638-7460

Fax: (617) 638-5226

www.bmc.org/
arthritis.htm

NYU Center for Arthritis & Autoimmunity

NYU Langone Medical Center

333 East 38th Street, 4th Floor

New York, New York 10016

(646) 501-7400

http://
nyulangone.org/
locations/
center-
for-
arthritis-
autoimmunity

In Canada

Rebecca MacDonald Centre for Arthritis and Autoimmune Disease

Mount Sinai Hospital

Joseph and Wolf Lebovic Health Complex

60 Murray Street, 2nd Floor (Main)

Toronto, Ontario, Canada M5T 3L9

Fax for appointments: (416) 586-8766

www.mountsinai.on.ca/
care/
rmcad/

Alopecia Areata

National Alopecia Areata Foundation

714 “C” Street

San Rafael, CA

(415) 456-4644

www.naaf.org

Antiphospholipid Syndrome

APS Foundation of America, Inc.

www.apsfa.org/

Arthritis

American College of Rheumatology

60 Executive Park South, Suite 150

Atlanta, GA 30329

(800) 346-4753

www.rheumatology.org

Arthritis Foundation

1330 West Peachtree Street

Atlanta, GA 30309

(800) 283-700

www.arthritis.org

National Institute of Arthritis and Musculoskeletal and Skin Diseases

www.niams.nih.gov

Complementary and Alternative Medicine

National Center for Complementary and Integrative Health

https://
nccih.nih.gov/

Celiac Disease

American Celiac Society

Dietary Support Coalition

www.americanceliacsociety.org/
index.html

Celiac Disease Foundation

20350 Ventura Boulevard, Suite 240

Woodland Hills, CA 91364

(818) 716-1513

Fax: (818) 267-5577

www.celiac.org

Celiac Support Association

413 Ash Street

Seward, NE 68434

P.O. Box 31700

Omaha, NE 68131-0700

(402) 643-4101 or 877-CSA-4CSA (toll-free)

Fax: (402) 643-4108

E-mail:
[email protected]

www.csaceliacs.org/

Gluten Intolerance Group

31214 124th Avenue SE

Auburn, WA 98092

(253) 833-6655

Fax: (253) 833-6675

E-mail:
[email protected]

www.gluten.org

Celiac Society

www.celiacsociety.com/

Chronic Fatigue Syndrome

Solve ME/CFS Initiative (formerly the CFIDS Association of America)

Solve ME/CFS Initiative

P.O. Box 36007

Los Angeles, CA 90036-0007

(704) 364-0016

E-mail:
[email protected]

http://
solvecfs.org/

Crohn’s Disease and Ulcerative Colitis

Crohn’s & Colitis Foundation of America, Inc.

733 Third Avenue, Suite 510

New York, NY 10017

(800) 932-2423 or (212) 685-3440

www.ccfa.org

National Institute of Diabetes and Digestive and Kidney Diseases

www.niddk.nih.gov/
health/
digest/
niddic.htm

United Ostomy Associations of America

P.O. Box 512

Northfield, MN 55057-0512

www.ostomy.org/
Home.html

Diabetes

American Diabetes Association

1701 North Beauregard Street,

Alexandria, VA 22311

1-800-DIABETES (800-342-2383)

www.diabetes.org

Juvenile Diabetes Research Foundation International

120 Wall Street

New York, NY 10005-4001

(800) 533-CURE or (212) 785-9500

Fax: (212) 785-9595

www.jdrf.org

National Institute of Diabetes and Digestive and Kidney Diseases

National Institutes of Health

www.niddk.nih.gov

Endometriosis

The Endometriosis Association

International Headquarters

8585 North 76th Place

Milwaukee, WI 53223

(800) 992-3636 or (414) 355-2200

Fax: (414) 355-6065

www.endometriosisassn.org

Fibromyalgia

Fibromyalgia Alliance of America

P.O. Box 21988

Columbus, OH 43221-0988

www.php.com/
fibromyalgia-
alliance-
america-
fhaa

National Fibromyalgia Research Association, Inc.

P.O. Box 500

Salem, OR 97308

(503) 588-1411

www.nfra.net

Lupus (Systemic Lupus Erythematosus)

Lupus Foundation of America

1300 Piccard Drive, Suite 200

Rockville, MD 20850

(800) 74-LUPUS or (800) 558-0121

www.lupus.org

S.L.E. Lupus Foundation

330 Seventh Avenue, Suite 1701

New York, NY 10001

(212) 685-4118

Fax: (212) 545-1843

E-mail:
[email protected]

www.lupusny.org

Lupus and Allied Diseases Association, Inc.

P.O. Box 170

Verona, NY 13478

(866) 258-7874 (toll-free) or (315) 829-4272

Fax: (315) 829-4272

E-mail
[email protected]

http://
nolupus.org

LupusLine
®

Telephone counseling offered in coordination with S.L.E. Foundation, Inc. and The Hospital for Special Surgery, New York City.

(866) 375-1427 (toll-free)

https://
www.hss.edu/
LupusLine.asp

National Kidney Foundation, Inc.

30 East 33rd Street, New York, NY 10016

(800) 622-9010

www.kidney.org/

Immunology

American Academy of Allergy, Asthma & Immunology

E-mail:
[email protected]

www.aaaai.org

Multiple Sclerosis

National Multiple Sclerosis Society

(800) 344-4686

www.nmss.org

American Academy of Neurology

www.aan.com

National Institute of Neurological Disorders and Stroke (NINDS)

www.ninds.nih.gov

Myasthenia Gravis

Myasthenia Gravis Foundation of America

5841 Cedar Lake Road, Suite 204

Minneapolis, MN 55416

(800) 541-5454 or (952) 545-9438

Fax: (952) 545-6073

www.myasthenia.org

Myositis (Polymyositis, Dermatomyositis)

The Myositis Association

755 Cantrell Avenue, Suite C

Harrisonburg, VA 22801

(540) 433-7686

Fax: (540) 432-0206

www.myositis.org

Pemphigus

International Pemphigus & Pemphigoid Foundation

Atrium Plaza, Suite 203

828 San Pablo Avenue

Albany, CA 94706

(510) 527-4970

www.pemphigus.org

Thrombocytopenia (ITP)

Platelet Disorder Support Association

8751 Brecksville Road, Suite 150

Cleveland, OH 44141

1-87-PLATELET or (440) 746-9003 (toll-free)

Fax: (844) 270-1277

www.pdsa.org

E-mail:
[email protected]

National Heart, Lung, and Blood Institute

Information Center

P.O. Box 30105

Bethesda, MD 20824

(301) 251-1222

www.nhlbi.nih.gov

Psoriasis/Psoriatic Arthritis

National Psoriasis Foundation

6600 SW 92nd Avenue, Suite 300

Portland, OR 97223

(800) 723-9166 or (503) 244-7004

Fax: (503) 245-0626

www.psoriasis.org

Genetic and Rare Disease (GARD) Information Center

National Institutes of Health

http://
rarediseases.info.nih.gov

Scleroderma

Scleroderma Foundation

300 Rosewood Drive, Suite 105

Danvers, MA 01923

(800) 722-HOPE (4673)

E-mail:
[email protected]

www.scleroderma.org

Scleroderma Family & DNA Repository

5431 Fannin Street, Suite 5.245

Houston, TX 77030

(713) 500-7196 Fax: (713) 500-0718

E-mail:
[email protected]

https://
med.uth.edu/
scleroderma-
registry/

International Scleroderma Network

www.sclero.org/
isn/
a-
to-
z.html

Sjögren’s Syndrome

Sjögren’s Syndrome Foundation, Inc.

6707 Democracy Blvd, Suite 325

Bethesda, MD 20817

(800) 475-6473 (toll free) or (301) 530-4420

Info line: (800) 475-6473

Fax: (301) 530-4415

www.sjogrens.org

Thyroid Disease

American Foundation of Thyroid Patients

P.O. Box 572472

Houston, TX 77257

E-mail:
[email protected]

http://
thyroidfoundation.cfsites.org/

American Thyroid Association

6066 Leesburg Pike, Suite 550

Falls Church, VA 22041

E-mail:
[email protected]

www.thyroid.org

Vasculitis

Vasculitis Foundation

P.O. Box 28660

Kansas City, MO 64188

(816) 436-8211 or (800) 277-9474

Fax: (816) 656-3838

www.vasculitisfoundation.org/

Affordable Care Act Information

Healthcare.gov

Federal law requires that insurers planning to significantly increase plan premiums (by more than 10 percent) submit their rates to the federal government (or states) for review.

To find rate review information for your insurance plan, follow this link:

https://
ratereview.healthcare.gov/

Kaiser Family Foundation (KFF)

KFF is a nonprofit organization following healthcare trends. Its website offers a wealth of information, including an insurance marketplace rate calculator:

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