New Treatments for Alpha 1 -
What do Alphas want?
The Food and Drug Administration will be making decisions that affect life for decades to come.
They are asking for your opinion NOW.
FDA Vote
In the United States, the Food and Drug Administration (FDA) is in charge of approving all new treatments for Alpha-1. It is a very complex and important process. They have enormous power and responsibility and want to add the patient perspective to their decisions. They want to hear from you!

This is a once in a lifetime opportunity. Act now!

How can my opinion make a difference?plus

When a company wants to create a new medicine, they have to run their own tests to prove it works and is safe. The FDA reviews the plans and company’s data and decides whether to give the company permission to start testing the medicine on people - a “clinical trial.” If all goes well, and the medicine works, the FDA approves it. Then the company can start providing the medicine.

Normally, the FDA spends all their time listening to doctors and scientists and reviewing mountains of data. The scientists spend a lot of time talking about how safe a treatment must be before patients are allowed to use it. Some argue that patients with serious diseases should be allowed to take any treatments that work for them – even treatments with some safety problems. The FDA found it is getting harder and harder to decide when a treatment is better than the disease. They have decided it is time to ASK THE PATIENTS.

This is where you come in. You have an opportunity to tell the FDA about what you think. What do you think about the current Alpha-1 treatments? What do you want to see in the future? What issues will YOU tolerate in order to live a better life with Alpha-1? What risks are you willing to take? What risks are you not willing to take? Most importantly, you have the chance to tell the FDA how having Alpha-1 impacts your life and the lives of your loved ones.

If the FDA approves new treatments, patients and their doctors will have more options. Nobody will be forced to take any treatment, but once a new treatment is approved, you can make your own decisions about whether you want to try it. If a treatment is not approved, nobody is allowed to use it.

This is a chance for you to tell the FDA.

This is the first time in history that the Food and Drug Administration has asked patients to come share their opinions – Tell them yours. It matters..

I want the FDA to hear my opinionplus

I will Participate Online: You can watch the FDA meeting on the internet September 29, 9:00 – 3:30 EST. There are 1,000 “seats.”

DEADLINE: You must register by September 15. Register here.

I can commit to Attending in Person: Can you travel if we make it easy? Come to the FDA Meeting in Silver Spring, Maryland (near Washington DC) September 29. Listen to other Alphas tell the FDA what their lives are really like. There will be a reception the night before. There are 300 seats and we want to fill them. Let’s show the FDA that Alphas really care.

DEADLINE: You must register by September 15. Register here.

I promise to fill out the Alpha 1 Survey for the FDA (and tell others about it): They want to hear from every Alpha and caretaker and we will make sure they do. The survey information will be collected and delivered confidentially at the meeting. Fill it out, even if you if you participate in the meeting, and help to strengthen the Alpha-1 community’s voice.

DEADLINE: You must complete the survey by September 15. Take the survey NOW.

I will share this great opportunityplus

Your circle of friends and family is a powerful tool. Let them help you make this meeting a success for you and Alphas everywhere.

I will help be sure my loved ones and Alphas everywhere have a chance to be heard: I will send a link to this page to every Alpha I know. It is important that they all read this message.

I will put out alerts on social media by clicking the “Share” link on this page.

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For more information on the FDA Alpha-1 meeting, read more here.

Contact Cathey Horsak for travel details and assistance and to hear about the Alpha-1 Reception taking place the evening before the meeting. chorsak@alpha1.org