Tag Archive for: cushings

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 

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

Tag Archive for: cushings

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

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