Thank you, Dr. Groft

Stephen C. Groft, Pharm.D.

Stephen C. Groft, Pharm.D.

The Lymphangiomatosis & Gorham’s Disease Alliance (LGDA) would like to express our deep thanks to Dr. Steve Groft on his retirement as the star of the world of rare diseases.  As the longtime Director of the Office of Rare Diseases Research (ORDR), Dr. Groft has been the leading voice in America for patients and families affected by a rare disease.   At the National Institutes of Health (NIH), he helped to establish the Trans-NIH joint initiatives – so important to understanding orphan diseases, and to foster collaborative research – an effort that has been the foundation of international collaboration.   His work in support of the passage of the Orphan Drug Act in 1983 is known throughout the world.  He is the international standard-bearer of rare diseases.

The LGDA is grateful to Dr. Groft for his support of our work.  He has given graciously of his very busy schedule to meet with us on a number of occasions; he was the keynote speaker at our recent First International Conference on Generalized Lymphatic Anomaly (lymphangiomatosis) and Gorham-Stout Syndrome in Bethesda.   And, we are especially thankful for Dr. Groft’s help – and that of his ORDR staff,  in the LGDA’s recent important effort to complete the development and live implementation of the LGDA International Patient Registry!

We extend our heartfelt thanks and very good wishes for his future.   He never forgot the rare disease community – and we shall never forget him.