Upcoming Events
Acromegalics and their family are meeting around the world to find support, educate themselves and their loved ones, and become part of our special #acrofamily. No matter how small or large, these events touch our lives and help us accept each other, without judgments or prejudices. Please join us!
Stay tuned for future events!
Past Events
Need to catch up on past events or webinars? Watch the videos below or visit our YouTube channel!
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Miss the presentation? Watch the talk at your own convenience! Topics included new advances in the medical management of Acromegaly, advances in pituitary imaging, craniofacial features and oral manifestations, sleep apnea, surgical considerations & radiotherapy, COVID-19, Quality of Life, mental health and pain management.
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The PAF Foundation and Acromegaly Community teamed up to help patients navigate through the Medicare/Insurance area!
Watch the webinar at the link below:
https://www.youtube.com/watch?v=vepf4rljEOo&feature=youtu.be
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The acromegaly externally led Patient-Focused Drug Development (PFDD) meeting is a groundbreaking initiative that will give acromegaly patients and their families the opportunity to provide the Food and Drug Administration (FDA), drug developers, and NPC stakeholders with perspectives from our community on a number of important issues. The meeting will follow the successful model developed by the FDA for similar Agency-convened meetings and provide persons with acromegaly the unique opportunity to share their story and experiences—including the challenges they face–with senior FDA officials and industry to better inform how therapies are developed and how the Agency evaluates and considers potential therapies for the disease. It’s mission is critical that all stakeholders (patients, physicians, pharmaceutical companies and the FDA) participate.
>> Watch Video
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How to cope with Pituitary Disorders: A Psychotherapist Perspective
Catherine is a mental health professional that focuses on building skills to help cope through challenging situations such as being a patient diagnosed with the rare condition, acromegaly.
>> Watch Video
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What is Compassion Fatigue and how does this impact you as an Acromegalic? Learn how you know if you suffer from Compassion Fatigue and what steps can you take to take better care of yourself. Juliette will specifically discuss how having a chronic and rare disease impacts Compassion Fatigue.
>> Watch Juliette's TEDxFargo
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What does it mean to have Acromegaly during the COVID19 pandemic? As an Acromegaly patient, are you auto-immune compromised which may put you at a greater risk? Learn more about how COVID19 impacts the endocrine system and Acromegaly at our next Education with the Expert webinar session.
>> Watch Video
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Are you an acromegaly patient that struggles with weight? Join Jessica Thomas as she discusses simple changes that can be made to try to help normalize hormones that could be working against you.
>> Watch Video
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Learn what medical therapies are up and coming in the world of Acromegaly.
>> Watch Video
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Learn more about the power and meaning of "community" especially in a pandemic and how these disruptions impact Acromegaly patients and their families.
>> Watch Video
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Meet Dr. Melmed Shlomo and learn more about Acromegaly and the endocrine system.
>> Watch Video
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