A definition of Juvenile Scleroderma in simple, easy to understand language
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Resources on the WWW:

Medical Resources

The Childhood Arthritis & Rheumatology Research Alliance (CARRA)
http://www.carragroup.info
Pediatric Rheumatology International Trials of Organizations (PRINTO)
http://www.printo.it
Pediatric Rheumatology Online Journal (PROJ)
http://www.pedrheumonlinejournal.org
EULAR Scleroderma Trials and Research group (EUSTAR)
http://www.eustar.org
Inception Cohort for Juvenile Systemic Sclerosis
http://www.juvenile-scleroderma.com/
American Academy of Dermatology - Kids Connection
http://www.aad.org/Kids/index.html
American Academy of Pediatrics/Rheumatology
http://www.aap.org/sections/rheumatology/default.htm
American College of Rheumatology
http://www.rheumatology.org
Health & Human Services for Kids
http://www.hhs.gov/kids/
National Institute of Health
http://www.nih.gov
National Institute of Arthritis & Musculoskeletal & Skin Diseases
http://www.nih.gov/niams/
National Organization for Rare Disorders
http://www.rarediseases.org
Journal of Rheumatology
http://www.jrheum.com/
Find a Pediatric Rheumatologist
http://www.rheumatology.org/directory/geo.asp
Pediatric Rheumatology Disease Website (PRINTO)
http://www.printo.it/pediatric-rheumatology/
Paediatric Rheumatology European Society (PRES)
http://www.pres.org.uk/

Scleroderma Clinical Trials Consortium (SCTC)
http://www.sctc-online.org/index.htm

American Academy of Child & Adolescent Pyschiatry (AACAP) - Facts for Families
http://www.aacap.org/publications/factsfam/index.htm
eMedicine - Eosinophilic Fasciitis
http://www.emedicine.com/derm/topic119.htm
Minocycline
http://www.rheumatology.org/public/factsheets/minocycline.asp

Education Resources

Financial Aid for Students with Disabilities
http://www.finaid.org/otheraid/disabled.phtml
IDEA 97
http://www.ideapractices.org
Disabilities Studies & Services Center
http://www.dssc.org/
The National Information Center for Children & Youth with Disabilities
http://www.nichcy.org/
Family & Advocates Partnership for Education
http://www.fape.org/
Guide To The Individualized Education Program (IEP)
http://www.ed.gov/parents/needs/speced/iepguide/index.html
National Home Education Network - Homeschooling
http://www.nhen.org

Other Resources

Family Medical Leave Act
www.dol.gov/esa/whd/fmla/
Pediatric Rheumatology Page - Thomas J.A. Lehman, M.D.
http://www.goldscout.com
For Kids Now - Low Cost Insurance
http://www.insurekidsnow.gov/
Social Security for Children
http://www.ssa.gov/pubs/10026.html
Brave Kids
http://www.bravekids.org/
Center for Effective Parenting
http://www.parenting-ed.org
Starlight Children's Foundation
http://www.starlight.org
Make-A-Wish Foundation
http://www.wish.org
Children's Miracle Network
http://www.cmn.org
A Siblings Site
http://www.asiblingssite.com
JRD Online Parent Support Group
http://www.geocities.com/beegal68/JRD-Website.html
The National Foundation For Facial Reconstruction
http://www.nffr.org 
Disabled Children's Relief Fund
http://www.dcrf.com

First Hand Foundation
http://www.firsthandfoundation.org
 
Children with Special Health Care Needs (CSHCN)
http://cshcnleaders.ichp.edu/TitleVDirectory/directory.htm
Sun Guard
http://www.ritsunguard.com
Applying Family Leave Law to Special Needs Children
http://www.wrightslaw.com/advoc/articles/fmla.protect.spolter.htm 
Caregivers Rights Under the ADA
http://www.eeoc.gov/fact/association_ada_html
Care Organizing Tools
www.cshcn.org/resources/carentbk.cfm
Disability Evaluation - Social Security for children with systemic or localized scleroderma
http://www.socialsecurity.gov/disability/professionals/bluebook/114.00-Immune-Childhood.htm

Please keep in mind, this webpage is for your information only.
Please check with your child's physician for any treatments.


For more information on Juvenile Scleroderma, contact:

Juvenile Scleroderma Network, Inc.
1204 W. 13th Street, San Pedro, CA 90731

Tel: (310)519-9511 (Pacific Time)
24 Hour Support Line: 1-866-338-5892 (toll-free)

Speak to another JSD parent for emotional and logistical support provided by home-based JSD volunteers. For medical advice, please contact your child's physician.

Non-Medical Questions or Comments? Click Here
Medical Questions? The Doctor's In: Q & A

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Updated March 3, 2008
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