Porphyria Community

Meet, discuss & support other patients or families living with Porphyria. Contribute to topics, or just share what's on your mind

formerEURORDISstaff
moderator

Living with EPP webinar

We'd like to invite you to a webinar:
"Living with EPP"
Sunday, August 11th at 20.00 CET (Barcelona time), 14.00 EST (New York)
http://eurordis.emea.acrobat.com/rare_dise...

Enter as a Guest with your Name, no password required. Connect your headset

Mission: People living with EPP and their families come together to share their stories, realize their similarities, share their strategies, and have a virtual meeting. There will be plenty of time for discussion.

We hope you can join us on August 11! If you're on holidays, don't worry, we'll record it and post the video here afterward.

If you have any questions, please write me: robert.pleticha@eurordis.org

amychapman
moderator

I put this on the APF Blog to reach more people. Amy APF

formerEURORDISstaff
moderator

Thanks Amy. I wrote Desiree to ask if maybe one of the people going to the FDA might be able to speak at the webinar about that experience.

amychapman
moderator

Yes we spoke last week. We hope to have some volunteers and a great meeting.

formerEURORDISstaff
moderator

Thanks Amy. Please pass on my email address to anyone that might be interested.

I wanted to have 4 presentations. So far, we have one from Jasmin confirmed. This person from US who is going to FDA would be the 2nd person and so that leaves 2 more stories to tell. If you have other suggestions of people who may want to talk, please write me.

amychapman
moderator

I have one EPP USA Rob Saupe who has confirmed case. I am working on another if I can got a hold of them. Do you have any format for questions in particular so they may prepare?

Thanks

formerEURORDISstaff
moderator

Hey Amy,

Rob had some health problems come up, and so I don't think he is going to be able to present his story this time.

I don't have any format in particular. People can share their stories via powerpoint slides or over their webcam. Or I can just ask the questions in an interview style.

I hope one of the people that will go to the FDA can talk a little about that.

Here are some sample questions people can answer:

When and how were you diagnosed with EPP?

What sort of impact did EPP have on your childhood?
Were there things you couldn’t do? Was it difficult?
How did your family cope with your EPP?

Does EPP affect the clothes you can wear?
Does EPP affect your diet?
Have you had to alter your home or office because of EPP?
How does EPP factor into your working life?

What do you believe are the physiological and psychological implications of EPP?

How do you approach EPP with GPs or physicians who are not aware of EPP?
Have you had any success with EPP medications?
What do you do to prevent outbreaks from the sun?
How do you cope with EPP now that you’re an adult?

What is your daily routine and how does EPP affect the decisions you make?

How do you describe EPP to people, how do you approach the topic with people who don’t know you?