Pancreatitis. An ugly word that has been likened to that of med-seekers and liars. The truth is it is not an ugly word, it is an ugly disease yet ignorance and stigmas surrounding it cause healthcare providers, far to frequently, to dismiss pancreatitis sufferers who are seeking treatment. Alcohol, by far, is not the only cause of pancreatitis. Nevertheless, time and time again, adults and children alike find themselves on the tail end of the question “ so how much have you drank today ?”. However even those induced by heavy or long-term drinking, undoubtedly deserve dignity, respect, and treatment.

Pancreatitis. Patients go undiagnosed and misdiagnosed for years. Due to the complications of the disease, many patients are unable to work which results in a lack of healthcare insurance. Most providers require insurance in order for the patient to receive adequate treatment. Disability benefits, sadly, are not easily acquired. Too often pancreatitis patients are caught in a cyclic process that leaves the patient untreated, discouraged and defeated. Too often they hear the phrase “ there is nothing more we can do .”

Pancreatitis. These patients suffer in silence and are even disregarded by their own friends and families. Spectators erroneously assume since patients may not “look” sick, they must be fine.  
It is difficult to instill hope when the situation feels seemingly hopeless. 

On March 3, 2020, the NPF will host the very first ever p ancreatitis Externally-led Patient-Focused Drug Development Meeting (EL-PFDD). It is a chance for patients, the NPF, and partners to join as a unified front. It is a chance to give a voice to those patients who are suffering in silence. It is a chance to instill hope. Please help us put advocacy into action. We implore you to join us as we galvanize stakeholders to stand with us in fighting for new and better therapies. 

The PFDD meeting will provide a better understanding of patient perspectives on diseases and plays a vital role in helping the FDA understand the context in which regulatory decisions are made for new drugs. The meeting will take place from 8:30 am - 12:30 am and will be live streamed. To RSVP and for more information, please CLICK HERE . We hope to see you on March 3rd!
"The NPF meeting with the FDA is essential in advocating our rights and responsibilities to further the research and development of medications to treat pancreas-related disease and cancer. Without our voices the FDA is unaware of how painful and debilitating pancreatic disease is and the far reaching impacts it has. It's not only my pleasure, but my duty, to share my voice and story with those who can effect change." - Adriana Cowdin, panelist
“Heightening the FDA’s focus on this devastating disease is an important accomplishment, and I am honored to have the opportunity to share my own experiences.” - Eric Golden, panelist
WHY IS THE EL-PFDD MEETING SO IMPORTANT?
The information and input from this PFDD meeting can inform and shape the FDA and stakeholders’ decisions regarding drug development and their review of a marketing application.
WHO SHOULD ATTEND THE EL-PFDD MEETING?
We want to fill the room and make sure that everyone affected by pancreas disease is able to be a part of this meeting whether you are a patient, caregiver, researcher, or family member. We will also have a webcast and want those that aren’t able to join in person, to sign-in through our live-stream. The live-stream is not just for those in the U.S – pancreatitis has no bounds and we encourage our international pancreas community members to RSVP and sign-in as well! The URL for the live-stream will be provided to those registered (for the webcast) by 7 AM EST (March 3rd). 
THE MANY FACES OF PANCREATITIS
PANCREATITIS: FACTS & FICTION

Please join The National Pancreas Foundation and Ariel Precision Medicine for our first webinar in our 2020 webinar series:
Genetics & Pancreatitis .

Wednesday, April 1, 2020 at 4:30 pm (EST)
CHAPTER & NPF EVENTS


*Save the date! More details to follow.
Education and advocacy are part of the National Pancreas Foundation's (NPF) mission. Please see the list of events that are coming up throughout the year. We hope you are able to join us! For a complete list, please see our Events Page .
PATIENT EDUCATION EVENTS

New 2020 Dates Coming soon!
SUPPORT GROUPS


If you would like to establish a support group in your city, please contact National Chapter Manager, Patrick Salami at [email protected].
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