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Shwachman-Diamond America

Last Update:7/22/2018
Contact:
Title:
Address:931-B South Main Street
#332
Kernersville, NC 27284
County:Nationwide
Phone:336-423-8158
Toll Free:
Fax:
TDY:
E-Mail:
Website:www.shwachmandiamondamerica.org
Mission

Shwachman-Diamond America's Mission:

  • Fund and promote research in all aspects of Shwachman-Diamond Syndrome.
  • Disseminate current medical literature to families and physicians.
  • Help fund the biennial International Congress on Shwachman-Diamond Syndrome.
  • Facilitate the development of a medical management plan.
  • Promote parent education through a family support network.
Program Description

SDS is a rare, genetic, multi-system disorder that affects the pancreas, bone marrow, and skeleton.  It usually manifests in infancy with infants that have loose, foul-smelling stools and inability to gain weight.  The bone marrow fails and makes patients susceptible to infection.  There is a risk of developing leukemia or aplastic anemia.

This organization provides educational information and medical literature on current care of patients with SDS.  There are links on current research studies accepting patient participation.  Patient assistance programs are available through two associated pharmaceutical companies.

By visiting the website, you can access e-mail-based support groups, school resources, and information on coping with chronic illness.  There is also a newsletter that you can receive by e-mail or access through the website.

Financial
Services
Bone Marrow Diseases/Transplant
Family Support
Financial Assistance
Counties Serviced
Nationwide
ABOUT SPECIAL KIDS RESOURCE DIRECTORY
7172 Graham Road, Suite 100, Indianapolis, IN 46250 E-Mail: familynetw@aboutspecialkids.org

As a matter of policy, About Special Kids does not specifically endorse any of the resources contained on our website or in our information packets. Resources are supplied for information purposes only and ASK recommends that families explore all options for assistance before making an informed choice.