DEPARTMENT OF HEALTH & HUMAN SERVICES                               Public Health Service

                          National institutes of Health
                                                                                                                                                   National Heart, Lung, and
                                                                                                                                  Blood Institute
Bethesda, Maryland 20892
NOV 2 3 1999
Mr. Gary Bain
Emphysema Foundation
for our Rights to Survive (EFFORTS)
7605 L 12th Street
Kansas City, MO 64126

Dear Mr. Bain:

I am writing to invite you to participate in a process by which the National Heart, Lung, and Blood Institute (NHLBI), NIH, hopes to enhance public input and involvement in its activities. As a first step, we are convening a meeting of representatives of public interest groups such as yours, members of the National Heart, Lung, and Blood Advisory Council, and senior Institute staff on Wednesday, February 9, 2000. We have lined tip several excellent speakers who will comment on the value of research into rare diseases and of contributions from basic research; illustrate various ways in which both well-established and "grassroots" advocacy groups have effectively influenced the Congress, the public, and the NHLBI  highlight the critical and often courageous role that patients play in shaping research directions; and describe, opportunities that exist for patients to participate in NHLBI clinical research protocols. Most important, we have scheduled ample time for small-group "roundtable" discussions in which you will be encouraged to share your ideas about how we can best involve you in activities of the NHLBI and stimulate a continuing dialogue with out public interest groups.

The meeting will be held in Bethesda, Maryland, near the N114 campus. The NHLBI is prepared to reimburse you or your designated representative for travel and per diem expenses.

Please use the enclosed form to fax your response to me by December 15, 1999, at 301-402-1056. If you agree to participate, additional administrative and logistical information will be sent to you in subsequent correspondence. If you have any questions, please call Ms. Judy Corbett at 301-496-4910.

I took forward to hearing from you and hope that you will be able to join us in this exciting endeavor,

Sincerely yours,

Claude Lenfant, M.D.