Season’s Greetings

We wish you, your family and friends … “lots of joy and peace in the upcoming year!”

the WAPO Board of Directors,
Sandra, Clive, Robert and Muriël

#seasonsgreetings
#happyholidays

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 

October Pituitary Month

In the global Pituitary Month October, WAPO would like to draw attention to the 8 pituitary disorders, which WAPO represents in various ways.
Besides these posters, WAPO also organized a Global Summit in Buenos Aires for the member organizations as well as a webinar in the 2023 Webinar series.
In this webinar will Kirsten Davidse (Erasmus MC in Rotterdam, the Netherlands) speak about ‘Transition of care from young adult care to adult care … We mind your step‘
The webinar can be found in the website Library from October 26th onwards, in free access and in English and Spanish.

 

If any questions on the above, please contact us via mail@wapo.org

Global Cushing’s Quality of Life Survey by CSRF – Invitation to participate

The Cushing’s Support and Research Foundation (CSRF) and the World Alliance of Pituitary Organizations (WAPO) are conducting a global survey to gather patient opinions about quality of life and the journey with Cushing’s. We understand that living with Cushing’s poses numerous challenges, and we deeply appreciate your willingness to share your experiences.

If you are 18 years of age or older and have been diagnosed with Cushing’s, you qualify to participate in this project.  If you do not currently fit this criteria, we will have additional opportunities in the future.

By participating in this survey, you are contributing to a collective effort that aims to enhance understanding, promote better care, and improve the lives of individuals affected by this condition worldwide. Findings will be reported at the World Alliance of Pituitary Organizations Summit in Buenos Aires, Argentina on October 7, 2023. Afterwards, a detailed report will be shared with all participating individuals and organizations, and there will be additional opportunities to share over the next year at conferences.

Your voice matters, and we are grateful for your time and input.  To learn more about this project and to take the survey yourself, please visit http://www.csrf.net/2023globalsurvey. The survey is available in English, French, and Spanish.  The survey opens on Monday, August 28, and will remain open until midnight EST on September 11 for this specific collection of data to present.
Afterwards, the survey will be open again.

Learn more about
CSRF at http://www.csrf.net and
WAPO at http://www.wapo.org

WAPO Summit 2023 Program

Registration upon invitation for WAPO Member organizations.
Questions? Send an email to mail@wapo.org

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:
English
Spanish

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.