We at the APF are getting very excited to see you all in Washington, D.C. in less than TWO MONTHS! Many of you have already RSVPed directly to the APF... thank you! In an effort to stay organized and efficient, we have created an event webpage for our FDA meeting. Even if you have already RSVPed to us, please sign up through this website, too. For those of you that have not RSVPed, in addition to signing up on this website, please still let Jessica at the APF know that you are planning to attend. She can be reached by email atJessica@porphyriafoundation. org or by phone at the APF office at 866-APF-3635 or 713-266-9617. We will keep you all up to date as the event approaches.Please do not hesitate to contact us if you have ANY questions surrounding this important event.RSVP HEREhttps://www.eventbrite.com/e/ patient-focused-drug- development-meeting-acute- porphyrias-registration- 31068098519"Remember....Research is the key to your cure!"
Friday, January 20, 2017
RSVP HERE https://www.eventbrite.com/e/patient-focused-drug-development-meeting-acute-porphyrias-registration-31068098519
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...