For those of you attending the FDA Meeting, if you haven't registered, please do so here: https://www.eventbrite.com/e/ patient-focused-drug- development-meeting-acute- porphyrias-registration- 31068098519If you are planning to speak at the FDA Meeting, please submit your speech to the APF by FRIDAY, so that we can know where to place you within the program!!The meeting will be webcast live on our YouTube Channel. Here is the link:**For those of you not attending the meeting in person, you do nothave to register in order to watch the live webcast. **If you misplace this link, you can also gain access via the APF website. Click on the "Register Now" link on the homepage of the APF website under the FDA announcement and it will bring you right to it!Note: The chat feature will only be accessible through YouTube Live!The APF meet and greet will be on February 28th at the College Park Marriott (same place as FDA meeting the next morning). The room will be open for an informal meeting space from 5-6PM and there will be a mandatory preparation meeting for all attendees from 6-7PM. After this meeting, you are welcome to go to dinner, hang out with friends, etc. The hotel has an on-site restaurant, The Common, and advance reservations are recommended. Please let the APF know if you plan on attending the meet and greet and preparation meeting ASAP. We need to make sure the space is large enough to accommodate everyone!The hotel provides a list of things in the area, for your convenience: http://www. marriott.com/hotels/local- things-to-do/wasum-college- park-marriott-hotel-and- conference-center/We can't wait to see everyone!!"Remember....Research is the key to your cure!"
Thursday, February 23, 2017
FDA Meeting Update please note
Bright Ideas! This is a place for kids to learn from others with EPP, to share their own tips and tricks on things like what to wear...
Happy Thanksgiving everyone 2017
EXCITING ANNOUNCEMENT!! You can now receive FREE genetic testing (DNA) and counseling for acute porphyria. DNA can tell a person if the...
4. The Pain Scale Is Useless to Us There’s that pain scale, numbered one through ten, with increasingly dour expressions on the faces...