Tuesday, August 23, 2016
RSVP FOR EPP MEETING with the FDA 10/24/16 Info
Hello everyone! We are very excited about the number of people we have already had RSVP for the upcoming meeting at the FDA. While we finalize the details of the meeting, here are a few things to keep in mind. PLEASE read everything carefully and feel free to contact me if you have ANY questions!
THINGS TO KNOW FOR THE FDA MEETING FOR EPP:
1. The FDA Meeting isfrom . The meeting will last the entire time, please plan your travel accordingly.
2. RSVPing to the APF DOES NOT register you for the FDA meeting. MAKE SURE you are registering at THIS LINK by. The same link is used for registering in person and via webcast.
scientific-workshop-for- erythropoietic-protoporphyria- epp-registration-24971245668
3. Make sure your valid Driver’s License, State ID or USA Passport matches the name you register with! You will need to show proof of ID before entering the FDA meeting. If you have already registered and it does not, or you are unsure, contact the event organizer at email@example.com.
4. If you have signed up for the meeting with the FDA, you should have received a confirmation email from EventBrite summarizing your registration information.
5. If you have ALSO signed up to participate in the panel during the meeting, you should have received a SECOND email from Meghana Chalasani (FDA meeting coordinator) with a list of discussion questions. The deadline to submit your reply for the panel is. You will be notified of your panel status at least a week in advance of the meeting. If you have signed up to speak at the panel, but did not receive this email, then you are not being considered for the panel. You must contact Ms. Chalasani to receive the questions.
6. The APF will be securing a room block forat the Holiday Inn Washington – College Park. This is also where the APF meeting will be on .
Address: 10000 Baltimore Ave, College Park, MD 20740
BUT you are not required to stay here, you can stay anywhere! The FDA has a complete list of hotels in the area. http://www.fda.gov/AboutFDA/
WorkingatFDA/ BuildingsandFacilities/ WhiteOakCampusInformation/ ucm241747.htm
The room block is NOT finalized at this time. We need to have an idea of how many of you will be using a room in the block and for which nights. Please let me know ASAP so we can sign the contract and finalize the hotel.
7. The APF meeting, with Dr. Robert Desnick, will befrom at the Holiday Inn – College Park. The room will be available starting at as an informal meeting space for attendees to mingle and get to know each other! Stop by and say hi to your fellow EPPers!
8. The FDA website has a FAQ section that includes detailed information about nearby airports and ground transportation: http://www.fda.gov/AboutFDA/
WorkingatFDA/ BuildingsandFacilities/ WhiteOakCampusInformation/ ucm241741.htm
9. The FDA has a general page with information about attending public meetings at the FDA: http://www.fda.gov/AboutFDA/
WorkingatFDA/ BuildingsandFacilities/ WhiteOakCampusInformation/ ucm241740.htm
If you have ANY questions, or just want to let me know how excited you are to attend, don’t hesitate to contact me! My email is Jessica@porphyriafoundation.
org. We are so excited this is happening and I look forward to meeting you all in person (finally)! :)
Learn about each gene- aminolevulinate dehydratase The ALAD gene provides instructions for making an enzyme known as delta-aminole...
Erythropoietic Protoporphyria What is erythropoietic protoporphyria? The word ‘erythropoietic’ means associated with red blood cells (‘...
#PAW2018 This year, each day we will bring you a member story of each type, a Medical Fact on each type, Medications approved ...
Happy Thanksgiving everyone 2017