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 check back again for upcoming events! 

Rare Disease Day 2021

February 28, 2021

Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.

Past Events

Need to catch up on past events or webinars? Watch the videos below or visit our YouTube channel! 

Acromegaly Externally-Led Patient Focused Drug Development Meeting

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.

Education by the Experts: Coping with Mental Health - Catherine Jonas

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.

Education by the Experts: Compassion Fatigue - Juliette Watt

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

Learn more about Juliett Watt

Education by the Experts: Covid-19 and the Effects on Pituitary Diseases - Dr. Kevin Yuen
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.
Education by the Experts: Eating with Acromegaly - Jessica Thomas
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.
Education by the Experts: What's New in Medical Therapy - Dr. Vivian Bonert
Learn what medical therapies are up and coming in the world of Acromegaly.
Educations by the Experts: Connections with Mind, Body, Individual, Family, and Community - Linda M Rio

Learn more about the power and meaning of "community" especially in a pandemic and how these disruptions impact Acromegaly patients and their families.

Learn more about Linda Rio

Education by the Experts: Dr. Melmed Shlomo, Endocrinologist

Meet Dr. Melmed Shlomo and lear more about Acromegaly and the endocrine system.

Acromegaly does not define us. We do not let our diagnosis hold us back from living a full and enriched life. Some have found passion, purpose, and inspiration through their diagnosis. These people bring inspiration, and we call this our "Faces of Hope".

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