HOW TO BECOME A WILSON’S DISEASE TISSUE DONOR Advancing the procurement, preservation and...

HOW TO BECOME A WILSON’S DISEASE TISSUE

DONOR

Advancing the procurement, preservation and distribution of human tissues and organs

for biomedical research

NDRI Mission Since 1980

NDRI Rare Disease Human Tissue Resource

Biospecimens Recovered

6,955

Donors 623

Diseases Represented 177

Specimens to Researchers 2,605

Specimens Banked 3,805

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

7

NDRI Rare Disease Donor Registry

• 411 Registered Donors with 46 Diseases in 45 States• 2,925 Tissues Recovered from 174 Donors with 33 Diseases

NDRI National Procurement Network

58 Organ Procurement Organizations

35 Eye Banks

25 Tissue Banks

12 Hospital Centers

14 Remote Sites

41 Recovery Personnel

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

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

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

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

Thank You !