Tissue Donations

Patient samples are the starting point for the study of any disease. For more common conditions these samples are available and relatively easily accessible for researchers. For rare diseases the patients and their samples are scattered around the world so acquiring sufficient tissue and fluid samples to conduct reliable research is the first challenge to overcome. Tissue and fluid samples are essential for genetic, histological and molecular studies of the disease, which are vital for finding potential therapies and a cure for the disease.

Our sister organization, the LGD Alliance, has an agreement with National Disease Resource Interchange (NDRI) for the coding, storing, management and distribution of tissue and fluid samples. Through the NDRI, patients can consent to donate samples, while the NDRI will facilitate the availability of those samples for approved researchers. Any research group willing to obtain lymphangiomatosis or Gorham’s disease samples must submit a study plan for approval. While primarily based in the US, the NDRI ships overseas and can coordinate with international agencies to obtain samples from non-US based patients for the use of US or non-US based researchers for specific approved studies. The only limitation is that samples from non-US citizens are not stored at NDRI for the use in the future.

 Assistance from patients is essential to conduct research. We cannot achieve useful results without patients being willing to donate their tissue (blood, chyle, ascites, pleural effusions, biopsies) for research. These patient samples are essential in order to improve diagnosis, develop therapies and to find a cure. Samples can be obtained from patients undergoing routine procedures that are connected to the diagnosis or treatment of their own condition, like blood tests, biopsies, surgery or therapeutic removal of lymphatic fluid..

If you are willing to donate any tissue, including blood or lymphatic fluid, for research please contact us at: