One in 10 Americans has a rare disease — a disease that afflicts fewer than 200,000 people a year in the United States. However, with nearly 7,000 of these rare diseases, the collective impact of these “orphan” ailments is significant. Research aimed at understanding and treating these disorders could benefit millions.
NDRI offers several resources and services to support researchers in this arena, including:
Rare Disease Biospecimen Inventory, a tissue bank with specimens representing rare diseases such as amyotrophic lateral sclerosis (ALS), cystic fibrosis, lymphangioleiomyomatosis (LAM) and Von-Hippel-Landau disease (VHL)
Exclusive access to the previously housed at the National Heart, Lung and Blood Institutes of Health (NHLBI).
To request specimens from the Rare Disease Biospecimen Inventory or the LAM Tissue Repository, fill out and submit the inquiry form on this page, and a member of the Scientific Services team will review your request.