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 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.
Need to catch up on past events or webinars? Watch the videos below or visit our YouTube channel!
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.
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.
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.
Meet Dr. Melmed Shlomo and lear more about Acromegaly and the endocrine system.