Skip to main content

Raising our Porphyria Voices at the FDA!

Raising our Porphyria Voices at the FDA!

  • Thursday, August 29, 2019
The Food and Drug Administration (FDA) hosted the American Porphyria Foundation on Monday, August 26th for a Rare Disease Listening Session.  Patient Listening Sessions are a way for the FDA to engage with patients or their advocates and they are one avenue for a patient community to share their experience with a disease or condition by talking directly with FDA staff. The objective of the meeting with the APF was to identify porphyria as eight distinct diseases that fall in two main categories (acute and cutaneous), to share patient perspectives on living with different types of porphyria and to convey our desperate need for treatment for all our members. Dr. Amy Dickey gave an overview of the porphyrias to set the stage for the patient talks. We were proud to have seven patients share their experiences living with Porphyria. Thank you to Jason Barrett, Jennifer Beck, Amy Chapman, Gudron Debes, Amy Dickey, Desiree Lyon, and Morgan McKillop for representing the APF community.  Each person did an excellent job sharing their message.  The FDA responded with specific questions and clarifications related to various types of porphyria – and with the feedback that we had met our objective for this meeting.

Comments

Popular posts from this blog

Amazing patient advocacy....and needed media for this issue. Thank you Terri Witter!

Meet Shadow Jumper Mitchell Felts

Meet Shadow Jumper
Mitchell FeltsMitchell Felts, age 12 How old were you when you were diagnosed?
I was 9 Years old. Do you remember your first flare/reaction?
No, I do not recall my first flare & reaction. What did it feel like to you?
It was tingling bad on my skin. What things help you feel better? (cool water, ice, shade, bath, clothes)
It helps me when I use cold rags and ice packs on my skin. How long does it take before you start to feel better?
Sometimes, I start to feel better after the first day, but sometimes it takes 2-3 days or longer to feel better. What kind of clothing/trends do you wear when you go outside or in bad lighting?
I can use long sleeves, hats and umbrellas. What is your most favorite sport to play or watch? Do you play it inside or outside? During the day or at night?
I enjoy playing baseball late in the day and it feels great to play at night. What ways are you able to adapt to do certain activities outside?
I must cover up, its hot outside so I must take breaks to c…

Medical Moment: Patient/Physician Relationship

Medical Moment: Patient/Physician Relationship
We all want a great relationship with our doctors, right? You, as the patient have a responsibility to establish a solid rapport with your physician and other members of the healthcare team. This can have a positive impact on the quality of care and better access to treatment. Yes, there could be a stigma associated with having Porphyria but don’t let it stop you from receiving the proper treatment that you deserve. Communication is KEY! Below you will find some key elements and tips that will not only prepare you for your visit with your doctor, but also build a strong relationship.
Here are a few tips for your doctor’s visit: 1. Plan – Be prepared! Prepare your questions and concerns beforehand. You want to be courteous of your physician’s time with you. 2. Make a list – Make a list of your questions, concerns and any other relating information. 3. Communication is key – Make sure that you understand fully what the doctor is explaining/a…