National Lymphatic Disease and Lymphedema Registry

The Lymphatic Research Foundation (LRF) is in the process of updating the National Lymphatic Disease and Lymphedema Registry in an effort to enhance the comprehensiveness of the registry database. This newly revised registry will be unveiled in 2013 although patients are currently still able to access the registry. This update was undertaken in response to the feedback we received from patients and their families, and we hope that the new registry will give patients the opportunity to add their distinct information to this valuable repository. A national patient registry paves the way for future clinical trials of experimental drugs and therapies to treat lymphatic diseases.

New Office for the Lymphatic Research Foundation

LRF is pleased to announce that we have opened an additional office in New York City. This new working environment on Madison Avenue will allow LRF to expand its operations and be more accessible to additional resources, patients, and organizations.

Rare Disease Day

LRF is pleased to partner once again with the National Organization for Rare Diseases (NORD) and its international counterpart EURODIS (European Rare Disease Organization) for the international advocacy day. The day, typically observed on the last day in February, is designed to bring widespread recognition of rare diseases as a global health challenge. Additional goals including supporting policies and practices that promote innovative research, access to the highest standards of diagnosis and care, as well as breaking the isolation of people living with rare diseases.

The theme of this year's day is “Rare Disorders Without Borders” to convey the global solidarity of the rare disease community. Rare disease patients all over the world face similar medical, social, and economic challenges.

To learn more about these efforts, visit www.rarediseaseday.us or www.rarediseaseday.org.