ndri mission since 1980
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NDRI Mission Since 1980. NDRI Rare Disease Human Tissue Resource. Adenoid Cystic Carcinoma Research Foundation Alpha-1 Foundation CF Foundation CFC International Ehlers-Danlos National Foundation Fanconi Anemia Research Fund Foundation for Sarcoidosis Research - PowerPoint PPT PresentationTRANSCRIPT
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HOW TO BECOME A WILSON’S DISEASE TISSUE
DONOR
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Advancing the procurement, preservation and distribution of human tissues and organs
for biomedical research
NDRI Mission Since 1980
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NDRI Rare Disease Human Tissue Resource
Biospecimens Recovered 6,955
Donors 623
Diseases Represented 177
Specimens to Researchers 2,605Specimens Banked 3,805
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NDRI Rare DiseaseVHO Partnership
Adenoid Cystic Carcinoma Research Foundation
Alpha-1 Foundation CF Foundation CFC International Ehlers-Danlos National
Foundation Fanconi Anemia Research Fund Foundation for Sarcoidosis
Research Foundation for Thymic Cancer
Research GBS/CIDP Foundation
International HHT Foundation International
Histiocytosis Association of America
Intracranial Hypertension Research Foundation
LAM Foundation LAM Treatment Alliance NTSAD OM Support Network PMD Foundation SLO/RSH Foundation Spina Bifida Association VHL Family Alliance Wilson’s Disease
Association International
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NDRI Rare Disease Donor Registry
• 411 Registered Donors with 46 Diseases in 45 States• 2,925 Tissues Recovered from 174 Donors with 33 Diseases
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NDRI National Procurement Network
58 Organ Procurement Organizations
35 Eye Banks
25 Tissue Banks
12 Hospital Centers
14 Remote Sites
41 Recovery Personnel
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Surgical Procedures (including biopsies) Transplant Procedures (liver, lung, bone marrow) Blood Draws – processed for DNA and cell lines Post Mortem
Options to Aid Research through Tissue Donation
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1. Register as a donor with NDRI - Quick and easy process: Call 1-
800-222-NDRI to speak with a private donor coordinator
- Complete Consent Form(s) - Complete Medical
Questionnaire(s) 1-800-222-NDRI or
www.ndriresource.org
NDRI’s Wilson’s Disease Donor
Registry
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2. Inform your family members and medical team / physician that you have registered as a tissue donor with NDRI
NDRI’s Wilson’s Disease Donor
Registry
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3. Contact NDRI when: You are scheduled for a
surgery or medical
procedure
Wait listed for a transplant
Notified of a transplant operation
NDRI’s Fanconi Anemia Donor Registry
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Thank You !
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