Thursday, September 8, 2016

FDA Public Meeting on Patients Who Have Received an Organ Transplant

A friend who was just placed on the "List" for a lung transplant sent a link to an announcement for an FDA Public Meeting on Patients Who Have Received an Organ Transplant.
On September 27, 2016, FDA is conducting a public meeting on Patients Who Have Received an Organ Transplant. FDA is interested in obtaining patient input on the impact of receiving an organ transplant on daily life and patients’ views on currently available therapies to manage organ transplantation.
That would be an awesome meeting to attend, and participate in.  There is no way we could afford the trip though.  So I did the next best thing, completed a survey being administered by the Alpha-1 Foundation.
"We understand that not everyone will be able to make it to D.C. for the meeting, but know that your comments will be valuable for the FDA to hear. To accomplish that, we are sending this 15-minute survey to the patient community members who have received a transplant.
Your prospective will make a difference.
We also undestand that transplant may affect more than a single person in your family. Feel free to submit additional surveys for each recipient. Caregivers are welcome to answer on behalf of their child or loved on they care for"
If you are living with a transplant, or are the caregiver of someone who is doing so, you can take the survey here: Survey for the FDA Patient-Focused Drug Development Meeting for Patients Who Have Received an Organ Transplant.

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