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!

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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. Anyone in the community–affected individuals, family members, health care providers, researchers, advocates–can register for the meeting until September 15th.

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


Action Alerts

The climb to political power starts with the person. Helping harness the strength of a community is what the Alpha-1 Foundation's Action Alert Program is all about. Throughout the year, opportunities to influence lawmakers are selected. An issue's background is explained, along with why it matters, and what you can do to help. These will be published on the Alpha-1 Action Center. Please help us improve the lives of Alphas by supporting efforts to obtain favorable legislation and regulations!

Encourage the development of new treatments and therapies, support the 21st Century Cures initiative today!