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Shwachman-Diamond Syndrome Foundation

Last Update:9/1/2017
Contact:Christine James
Title:President
Address:PO Box 40
Avon, NY 14414
County:Nationwide
Phone:
Toll Free:888-825-7373
Fax:
TDY:
E-Mail:
Website:www.shwachman-diamond.org
Mission
Our Mission Advocate and support research towards a cure and improve medical management of symptoms Educate the medical community and general public about Shwachman-Diamond Syndrome Provide emotional support to patients and their families Link families through medical/family conferences to share experiences and ideas Disseminate current medical information Support an International and National Patient Registry and International Medical Conferences
Program Description
Emotional support is offered by joining an e-mail support group or contacting one of the regional or international family contacts provided on the website. This serves to provide caregiver to caregiver emotional support. Education is provided through the website, links to other websites, and a newsletter. A doctor database serves as a potential resource for families in need of seeing a physician with expertise in SDS.
Financial
Services
Bone Marrow Diseases/Transplant
On-line Community/Listserv/Social Media
Counties Serviced
Nationwide
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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.