Upcoming News -Virtual Patient Education Meetings Member Stories

  • Sep 25, 2020

Nutrition and the Acute Porphyrias

October 6, 2020 at 6:00 PM EDT

Hi there,

You are invited to a Zoom meeting.
When: Oct 8, 2020 07:00 PM Eastern Time (US and Canada)

Register in advance for this meeting:

https://us02web.zoom.us/meeting/register/tZYlfu6trD4sGtL9VyhBP94sz52H9tRRDe1X 

After registering, you will receive a confirmation email containing information about joining the meeting.

 

 

NORD Summit

The rare disease community is “Entering a New Era” in which scientific innovation is driving progress toward transformational and even curative treatments, even this extraordinary year has prompted a new awareness of the potential impact of global public health challenges.  The 2020 NORD Summit will explore these and related topics.

Click the link below to learn more:
https://rarediseases.org/summit-overview

 

Virtual Patient Education Meeting with Dr. Sioban Keel

October 26, 2020
8:30 PM EDT / 5:30 PDT

Hi there,

You are invited to a Zoom meeting.
When: Oct 26, 2020 08:30 PM Eastern Time (US and Canada)

Register in advance for this meeting:

https://us02web.zoom.us/meeting/register/tZIqf-2pqTsjEtA5pq_jcd6foPygfnmLF2Yu 

After registering, you will receive a confirmation email containing information about joining the meeting.

 

Member Stories- If you have Porphyria or a caregiver, friend or family We are looking for your stories!  You can help encourage patients who may be looking for answers to their questions, identify a health moment you both share and help so others that they are never alone in this fight of porphyria.  Please reach out to me or email me directly amy@porphyriafoundation.org

Check out the APF store for Educational Materials, ED Kits- for the Acute Porphyrias & Cutaneous & APF Swag

https://porphyriafoundation.org/apf-store/ 

 

 

 

 

 


 

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