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:

Rare Disease Day – February 28 2023


February 28, 2023 – Rare Disease Day is the globally-coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease.

Since its creation in 2008, Rare Disease Day has played a critical part in building an international rare disease community that is multi-disease, global, and diverse– but united in purpose.

Rare Disease Day is observed every year on 28 February (or 29 in leap years)—the rarest day of the year.
Rare Disease Day was set up and is coordinated by EURORDIS and 65+ national alliance patient organisation partners. Rare Disease Day provides an energy and focal point that enables rare diseases advocacy work to progress on the local, national and international levels.

WAPO supports Rare Disease Day with a webinar on ‘Pain and Stress’ by Emilio Covarrubias (Chile) in English and Spanish. Check our Library on the website wapo.org

Want to read more or download materials, click here

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.