Skip to main content

Patient Education Meetings, PCT Study & Longitudinal Study

Patient Education Meetings and more...




Patient Education and Support Meeting
LOCATION:
Cincinnati Children's Hospital | 3333 Burnett Ave. | 2nd Floor, Section D | Cincinnati, OH 45229
DATE AND TIME:
09/29/18 11:00am - 09/29/18 1:00pm

Are you interested in hosting a Patient Education and Support Meeting?
This is a valuable opportunity to bring patients, caregivers and supporters together to share common issues and to learn more about porphyria from an expert. The APF would like to help you coordinate your efforts. Please click on the link below, fill out the form attached and send it back to Edrin Williams via email at edrinw@porphyriafoundation.org or by mail to the APF office and someone will be in touch to map out the details of your meeting. We look forward to hearing from you!

Harvoni Study - PCT       
Do you have PCT? Are you interested in participating in research? Do you have Hepatitis C? If you answered YES to these questions, this is for you.
We need YOU for a clinical trial!
The purpose of this clinical trial is to assess whether Harvoni alone is an effective therapy in active PCT patients with Chronic Hepatitis C.
Who can participate?
Adult patients with PCT who also have Hepatitis C

If you are interested in participating please contact Edrin Williams, Director of Patient Services at the APF office at 301.347.7166 for additional information.

Safe/Unsafe Drug Questionnaire for the Acute Porphyrias (AIP,VP,HCP & ADP)              
The APF is collaborating with researchers to identify new safe and unsafe drugs. We need your help. Are you experiencing adverse effects with any of your new medications? If so, please let us know in the questionnaire below how it affected you. We will share these results with our team of renowned Porphyria experts/researchers. They are in the process of updating our safe and unsafe drug list for the acute porphyrias. Your donations will help us educate physicians about the dangerous effects of unsafe drugs. Please click on the link below for the Questionnaire.
Safe and Unsafe Drug List Questionnaire

Longitudinal Study
Are you interested in participating in research? If so, we need YOU!! Our team of researchers are searching for people to participate in the Longitudinal Study.
The purpose of this long-term follow-up study is to collect a large group of patients with the different types of porphyria and to provide a better understanding of the natural history of these disorders. The hope is that this information will help in developing new forms of treatment.
Contact Edrin Williams, Director of Patient Services at the APF for additional information.
            

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…