The Givosiran Trials will begin soon. If you are interested in participating in research for this exciting new treatment, please contact Edrin at the APF (713.266.9617). A few parameters have been set for eligibility: You must have a confirmed diagnosis, have elevated PBG during an attack, have several attacks a year and willing to comply with the requirements of the trail. Of course, travel will be paid for those eligible for participation. We will enlighten you all soon. Stay tuned!
Health Professional Radio Interview
Desiree Lyon Howe, APF Executive Director, was given the opportunity to enhance porphyria awareness by participating in a live radio interview with Health Professional Radio. Desiree spoke on the acute hepatic porphyrias, raising patient and physician education, misdiagnosis and much more. Additional interviews included our very own Sharon Dill and Evelyn Jacobucci. Thank you!
Health Professional Radio is an online radio/podcast network targeting 35K global healthcare professional listeners with a focus on "news and talk" geared toward a range of healthcare professionals across specialties and with a range of clinical experiences (including residents, nurses, and MDs). The show includes interviews with experts and everyday people on important health topics; some content is clinical, some management orientated, and some lifestyle orientated.
Click on the link to take a listen:
2018 HEME BIOSYNTHESIS AND THE PORPHYRIAS: RECENT ADVANCES SCIENTIFIC CONFERENCE and CLINICAL DAY FOR PATIENTS!
Mark your calendars to join the American Porphyria Foundation and the Genetic Disease Foundation along with expert physicians from around the world!
January 12-14, 2018
Click on the link below to view the agenda and register for Clinical Day for Patients. We look forward to seeing you there. If you have any additional questions, please contact the APF at 1.866APF.3635.
"Remember....Research is the key to your cure!"