Tag Archive for: acromegaly

Patient Solidarity Day 2023

Patient Solidarity Day takes place each December. Thousands of people across the world rally around one topic relevant to the patient community and show support for the Day by raising awareness on social media and hosting activities to mark the campaign.

This year, on Friday, 8th December 2023 health stakeholders from all over the world will stand together to celebrate Patient Solidarity Day 2023 under the theme ‘Expert patients – the indispensable voice’.

On PSD 2023, we will celebrate the strength, resilience, and knowledge of expert patients who have taken control of their health journeys and contributed to health systems strengthening in various ways.

The empowered expert patient who has taken control of their health journey and is advocating for health systems transformation is an indispensable voice in the healthcare value chain.

We will use the occasion of PSD 2023 to invite the patient community from all over the world to share with us their views of who an expert patient is – what skills and assets make them an expert patient. With this feedback, we want to start shaping collectively and collaboratively a definition of the expert patient that truly translates the views and thoughts of patients worldwide.

Follow and join the buzz on social media – #PSD2023

Stay tuned for more resources to help you call for ‘Expert patients – the indispensable voice’..
Patient Solidarity Day 

Early diagnosis for Acromegaly patients – Research Study

Would you like to help Acromegaly patients get diagnosed earlier to improve their quality of life? We are trying to do just that and invite you to help.

Acromegaly, including gigantism, is caused by a growth in the pituitary gland that results in too much growth hormone being made. This can affect external appearance and internal organs causing early high blood pressure, diabetes, heart disease, and many other problems that shortens and impacts the quality of a person’s life. Currently, Acromegaly takes many years to diagnose.

We will be launching an international research study to determine if we can detect the earliest signs of Acromegaly using the latest computer technology. This study is led by Dr. Michael D. Cusimano, a Neurosurgeon and Professor in Toronto, Canada.

If you or a family member have Acromegaly/gigantism or a pituitary tumour, you can directly help by participating in this study. Please look out for an invitation to this study that will provide more information and a secure online link to participate. In preparation of participating, we encourage you to prepare a collection of pictures of your face and/ or hands and feet, as well as any documents you might have about proof of your condition.

If you’d like to learn more or have questions about taking part in this study, please send an email to the research team at acromegaly-research@smh.ca

Thank you for considering participating in this study!

WAPO webinar on this project by Dr Michael D. Cusimano:

Webinars 2022

Earlier in 2022, WAPO organized a series of webinars with interesting topics, which are visible in the WAPO Library. Now, since Summer is over, we have another 3 interesting webinars for you …

Register via the following link: https://cvent.me/eOyQ4D
Feel free to share with other patient advocates, people living with the disease or their caregivers, or other stakeholders. We look forward to meeting you there.

In case you are not able to join, or want to see the presentations later, please have a look at our Library with all webinars and video presentations we already had.

We are already scheduling webinars for 2023. Please follow our social media to stay informed.

Tag Archive for: acromegaly

Webinar 4-2023 – Depression and the Pituitary Patient – Linda M Rio

Webinar 4-2023 – Depression and the Pituitary Patient – Linda M Rio (ES)

Webinar 5 – D. Badiuk – Guidelines Acromegaly treatment

Webinar 4 – E. Valassi – Research Outcomes Acromegaly & Cushing

WS20 – Visual Impact of Pituitary Disorders (EN)

Tag Archive for: acromegaly

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