Let the FDA know how Alpha-1 Impacts you

Participate in FDA Meeting on Patient-Focused Drug Development for Alpha-1 Antitrypsin Deficiency!

The US Food and Drug Administration (FDA) recently announced that it has scheduled the Patient-Focused Drug Development Meeting on Alpha-1 Antitrypsin Deficiency for Tuesday, September 29, 2015. We need your help to make this meeting a success!

FDA Survey

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This meeting is part of FDA’s new Patient-Focused Drug Development Initiative, enabling FDA officials to hear directly from patients about living with a particular condition and treatments that matter most to them. FDA believes it can make better review decisions if it has a more robust understanding of patients’ daily lives in living with a disorder and their tolerance for benefit/risk tradeoffs.

This meeting is an incredible opportunity for FDA officials to hear directly from people affected by Alpha-1 and their family members about their daily lives and treatment preferences. To make the most of this opportunity, we need as many people with diverse experiences with Alpha-1 to participate as possible. The FDA seeks participants affected by lung and liver diseases stemming from Alpha-1.

Members of the Alpha-1 community are also urged to fill out the FDA survey -- see the button below.

People can attend in person or participate via webcast. The Alpha-1 community has already filled the room with 300 people, so you can no longer register to attend in person. Anyone in the community–affected individuals, family members, health care providers, researchers, advocates–can register to watch the webcast live and ask questions TILL SEPT. 27.

The Alpha-1 Foundation is also exploring ways to survey community members to engage and hear perspectives from individuals who aren’t able to attend the meeting. More information on the survey will be released in the coming weeks.

Please stay tuned for more information about this exciting meeting. If you have any questions, please contact Karen Erickson at

Frequently Asked Questions

When and where will the FDA public meeting take place?plus

The public meeting will be held
Sept. 29, 2015 from 9:00 a.m. – 3:30 p.m. EST

It will be held at the
FDA White Oak Campus
10903 New Hampshire Ave
Building 31 Conference Center
the Great Room (rm. 1503)
Silver Spring, MD 20993.

How do I sign up to attend the meeting in person?plus

The Alpha-1 Community has filled the room with 300 seats! No more seats are available to attend in person.

Anyone who has registered, please contact Cathey Horsak, the Alpha-1 Foundation’s director of community progams, at for travel details and assistance and to hear about the Alpha-1 reception taking place on Sept. 28, the evening before the meeting.

How do I sign up to watch the live webcast?plus

You must register online by the Sept. 27th deadline.

Click the button that says REGISTER TO WATCH. This link will take you to the

FDA’s meeting registration page (Eventbrite website).

One form must be completed per person. Select a quantity of 1 on the ONLINE option, then click the button that says REGISTER and fill out the form.

You will receive a confirmation email from the FDA’s ticket website (Eventbrite).

The live webcast is scheduled to begin at 9:00 a.m. EST on Sept. 29. The FDA will send email you a link to view the live webcast at a later date.

While you’re watching, we invite you to share your thoughts and comments on Facebook and Twitter using the hashtag #Alpha1FDA. (What is a hashtag?)

I registered to attend in person. Is there travel assistance?plus

Contact Cathey Horsak for travel details and assistance and to hear about the Alpha-1 reception taking place on Sept. 28, the evening before the meeting.

Can I submit a question to the panel if I am watching online?plus

Yes. Online participants will be able to submit questions to the FDA and audience using a chat function. Questions will be addressed as time allows.


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