CAMBRIDGE, Mass.  After Amy Farber learned she had the rare and fatal disease called LAM in 2005, she became determined to increase and speed up research into her illness with the hope of finding a cure in her lifetime.

Dr. Farber, now 39, was a law student with a doctorate in anthropology who was about to start a family. She quit law school and founded the LAM Treatment Alliance to raise money and connect a network of scientists around the world to research this mysterious disease, which destroys young women’s lungs.

To her dismay, she says, she encountered a cumbersome research system fraught with obstacles to collaboration and progress  one that failed to focus on patient needs.

“We can do better,” she remembers thinking.

She took her frustrations to Dr. George Demetri, a member of her organization’s advisory board. A professor and cancer researcher at Harvard Medical School, Dr. Demetri had long wanted to use the Internet to connect patients around the globe and mine their collective wisdom for new insights into the rare cancers he studies.