• Apr 29, 2021

Enjoy todays enews & we hope to see Acute Patients on zoom.

 

https://conta.cc/2R7R2Fk

 

?TONIGHT!

Givlaari ® Patient Networking Forum

Join us on Apr 29, 2021 06:00 PM Eastern Time for this patient-only networking forum for members with Acute Hepatic Porphyria who are using the treatment Givlaari ® .

 

This Zoom gathering will be an opportunity for patients to connect in an informal and comfortable group to discuss the treatment, share experiences and to give and get peer support.

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To RSVP & Receive Zoom Link: https://us02web.zoom.us/meeting/register/tZElde2orTIrHNCvKxCIk0nSYYTNbmtknL9O

Share How Porphyria Impacts You!

Porphyria News  developed a survey, with the support of the APF, to "bring clarity to our collective understanding of life with porphyria." The initial survey will develop a baseline for the porphyria community; with the possibility of subsequent surveys to compare the baseline to life with porphyria .  This survey is intended for all impacted by Porphyria including patients, caregivers, medical professionals, family members, etc.). 

 

The APF will coordinate with Porphyria News to share the results of the survey.

 

To participate in the survey click on the link below.

 

Porphyria Survey

Digestive Disease Week 2021 Goes Virtual!

This year's Digestive Disease Week 2021: Centered on Growth , will be a virtual event held on May 21-23 . This critical conference is a must for medical professionals working in research, patient care and education.

 

Click for More Information and to Register

Medical Moment

Recent Study on Insulin Resistance and AIP

A recent mouse model study, High Prevalence of Insulin Resistance in Asymptomatic Patients with Acute Intermittent Porphyria and Liver-Targeted Insulin as a Novel Therapeutic Approach , published in Biomedicine has found a high instance of insulin resistance among patients with Acute Intermittent Porphyria (AIP). The study Investigators reported “that [insulin resistance] and high-serum insulin levels are not a consequence of disease activity, but rather that sustained hyperinsulinemia can protect against acute attacks of porphyria.”

 

Insulin resistance occurs when cells do not respond to insulin and can't process blood glucose into energy. Therefor, finding a more effective form of insulin delivery in the liver may improve the effects of glucose therapy for preventing acute attacks.

 

Click to Read the Full Study

Upcoming Patient Education Meetings

Dr. Sean Rudnick

LOCATION
Zoom
 

DATE AND TIME
05/18/21 7:00pm - 05/18/21 8:00pm
 

Virtual Patient Education Meeting with Dr. Sean Rudnick, Wake Forest Medical Center
Tuesday, May 18, 2021
Time: 7:00 PM eastern

I'll be there!
I can't make it

Zoom Meeting w/Dr. Brendan McGuire

LOCATION
Zoom
 

DATE AND TIME
06/08/21 7:00pm - 06/08/21 8:00pm
 

Tuesday, June 8, 2021 at 7:00 PM eastern
Virtual Patient Education Meeting with Dr. Brendan McGuire, University of Alabama, Birmingham

I'll be there!
I can't make it

Rare Disease Week 2021

Save the date - July 14-22, 2021! Rare Disease Week on Capitol Hill is an annual event that connects the rare disease community with their legislators and fellow advocates. It is an opportunity to educate and spread awareness, while advocating for porphyria.

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Click Here to Learn More

?APF's COVID-19 VACCINE STATEMENT

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Generally, there is no evidence that any vaccines cause particular problems in people with porphyrias. As a general rule, we therefore recommend that patients with any type porphyria receive vaccinations, in accordance with established guidelines, and under the care and follow-up of their personal physicians.

 

It is the unanimous opinion of the expert physicians of the Porphryias Consortium that it is important for all porphyria patients to receive the COVID-19 vaccinations , unless their personal physicians have indicated that, in their particular medical situations, not including porphyria, vaccination is not recommended.

Contact Information

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Is your contact information up to date?

If not please give us a call @ 866-APF-3635 or Email to info@porphyriafoundation.org

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

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