This is from my support group. Sobering to consider that one has an orphan disease. . . .

FDA Rare Disease Patient Advocacy Day

Please plan to join this webcast or visit in person. Ask your doctors to
attend on behalf of the multitudes who have Achalasia. If any of you can attend,
and speak this would be wonderful. See the links below to register and get
more information


FDA Rare Disease Patient Advocacy Day

http://tinyurl.com/4wygaab
http://tinyurl.com/6m22as2

The Food and Drug Administration's (FDA) Office of Orphan Products
Development is announcing the following meeting: FDA Rare Disease
Patient Advocacy Day. This meeting is intended to enhance the awareness
of the rare disease community as to FDA's roles
and responsibilities in the development of products (drugs, biological
products, and devices) intended for the diagnosis, prevention, and/or
treatment of rare diseases or conditions. The goal of this meeting is to engage
and educate the rare disease community on the FDA regulatory processes.

This educational meeting will consist of a live and interactive simultaneous
Web cast of presentations provided by FDA experts from various Centers
and Offices, as well as from outside experts. The interactive meeting
will include two general panel discussion sessions, as well as afternoon
breakout sessions for more in depth information on the roles of FDA. In
addition, on site attendees will have an opportunity during lunch to
engage with FDA and outside experts in a small group setting.





For more information please visit: FDA Rare Disease Patient Advocacy Day