Skip to main content

Porphyria Post July 20th, 2018




Porphyria Post

https://imgssl.constantcontact.com/letters/images/1101116784221/S.gif

Last Call - Request Priority Review of Scenesse
URGENT NEED FOR LETTERS
https://imgssl.constantcontact.com/letters/images/sys/S.gif
https://imgssl.constantcontact.com/letters/images/sys/S.gif
https://imgssl.constantcontact.com/letters/images/sys/S.gif
The new drug application for Scenesse has been submitted to the FDA - and it is time to advocate! We need your letters to the FDA Commisioner requesting Priority Review. Please send your letter immediately to add to our growing pile!! It is starting to look impressive!

All letters must be signed and emailed to the APF this weekend. We will submit the letters to the FDA on Monday July 23, 2018.

Begin your letter:
Scott Gottlieb, M.D.
FDA Commissioner
U.S. Food and Drug Administration
10903 New Hampshire Avenue
Silver Spring, MD 20993
Dear FDA Commissioner:

Scan or Email your signed letter to:

We will present all of the letters at once to the FDA! Right now we have 478 letters. Let's get to 500! Please send letters today! Time is of the Essence!

We have moved.

The American Porphyria Foundation is excited to announce out move to Bethesda, Maryland - next door to our nation's capital. Please update your records with our new address.

American Porphyria Foundation
4915 St. Elmo Ave., Suite 105
Bethesda, MD 20814
Telephone: 301.347.7166



https://imgssl.constantcontact.com/letters/images/1101116784221/S.gif

Support the APF through Amazon Smile
https://imgssl.constantcontact.com/letters/images/sys/S.gif
https://imgssl.constantcontact.com/letters/images/sys/S.gif
https://imgssl.constantcontact.com/letters/images/sys/S.gif
You can now support the APF through the AmazonSmile program! Amazon will donate 0.5-0.8% of the price of your eligible purchases to the APF, at no cost to you. Please make the APF your choice of a charitable organization. Support porphyria research while shopping!

Note, this program to provide donations to the APF will ONLY be available to shoppers who visit Amazon via a special web address, namely, www.smile.amazon.com instead of the normal www.amazon.com homepage.

It is easy and free! AmazonSmile is the same Amazon you know – same products, same prices, same service. 

Thank you for supporting us! Please follow the link:


Get Involved


https://imgssl.constantcontact.com/letters/images/1101116784221/S.gif

Last Call - Request Priority Review of Scenesse
URGENT NEED FOR LETTERS
https://imgssl.constantcontact.com/letters/images/sys/S.gif
https://imgssl.constantcontact.com/letters/images/sys/S.gif
https://imgssl.constantcontact.com/letters/images/sys/S.gif
The new drug application for Scenesse has been submitted to the FDA - and it is time to advocate! We need your letters to the FDA Commisioner requesting Priority Review. Please send your letter immediately to add to our growing pile!! It is starting to look impressive!

All letters must be signed and emailed to the APF this weekend. We will submit the letters to the FDA on Monday July 23, 2018.
Begin your letter:
Scott Gottlieb, M.D.
FDA Commissioner
U.S. Food and Drug Administration
10903 New Hampshire Avenue
Silver Spring, MD 20993
Dear FDA Commissioner:

Scan or Email your signed letter to:

We will present all of the letters at once to the FDA! Right now we have 478 letters. Let's get to 500! Please send letters today! Time is of the Essence!

https://imgssl.constantcontact.com/letters/images/1101116784221/S.gif

Clinical Trial for EPP!
Research is the key to your cure! What is the most important element in research? YOU! You now have an opportunity to participate in a trial for a new EPP investigational drug. Contact the APF for details. YOU are our hope for the future. Contact the APF on 1-866-APF-3635 or email porphyrus@porphyriafoundation.com.

An oral investigational drug has been developed with the potential to increase sunlight duration and tolerance in individuals with EPP. This phase II clinical trial is needed to understand if the investigational drug works and to ensure that it is safe. The study duration is 24 weeks including follow-up. You must be age 18-70 to participate
and have a confirmed diagnosis of EPP. All travel is included and will be arranged by a concierge service.

"Remember...Research is the key to YOUR cure!”
Each Step Toward Finding an Effective Treatment is Important!

https://imgssl.constantcontact.com/letters/images/1101116784221/S.gif

Harvoni Study - PCT
https://imgssl.constantcontact.com/letters/images/sys/S.gif
https://files.constantcontact.com/b87e847f601/c77c73e7-3978-43f2-b465-ff642344a0aa.png
https://imgssl.constantcontact.com/letters/images/sys/S.gif
https://imgssl.constantcontact.com/letters/images/sys/S.gif
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.

https://imgssl.constantcontact.com/letters/images/1101116784221/S.gif

Update your records....
Contact Information

Is your contact information up to date?
If not please give us a call @ 866-APF-3635 or Email to porphyrus@porphyriafoundation.com

American Porphyria Foundation| 1.866.APF.3635 | porphyriafoundation.org

STAY CONNECTED

"Remember....Research is the Key to Your Cure!"


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…