World Alliance of Pituitary Organizations (WAPO)

Patient Insights Survey into Cushing’s disease now available in (multiple languages) The purpose of this survey is to help us understand the experience of people living with Cushing’s Disease. Whether you are personally dealing with this disease, a patient representative, or a healthcare professional caring for people living with Cushing’s Disease, we would like to learn from your experience. By participating, you will help us learn more about Cushing’s Disease and its impacts on people’s lives. We can only accept answers from people living in the following countries: Austria, Australia, Chile, Denmark, France, Ireland, Italy, Netherlands, Norway and United States of America. Unfortunately, we may not be collecting responses in your country at this time. To learn more about Cushing’s Disease. The survey will be open until the end of November. This survey was co-created by ‘WAPO‘, Lundbeck and Red Thred Solutions. To participate in the Survey click the below link ⬇️⬇️⬇️ https://lnkd.in/eRPeNTMf Please find the survey links in multiple languages: In English: https://lnkd.in/eCxk2tQ8 In French: https://lnkd.in/eB8P73wk In Spanish: https://lnkd.in/ehvR9dis In Italian: https://lnkd.in/eFzdk-n8 In German: https://lnkd.in/eqxtQYZT In Dutch: https://lnkd.in/e-JhZw3d In Norwegian: https://lnkd.in/e3QmGRBj In Danish: https://lnkd.in/evrdw9uj For Health Care Professionals: In English: https://lnkd.in/egVTCGNw

"Walk with WAPO" series for Acromegaly Awareness Day...🥁 Today we will be learning about acromegaly! 🫶 Acromegaly is a rare disorder caused by an excessive production of growth hormone, most often resulting from a growth hormone-secreting pituitary adenoma (benign tumor of the pituitary gland). 📈 Symptoms include: 🔵 Headaches 🔵 Enlarged hands and feet (rings no longer fitting 💍, increase in shoe size 👟) 🔵Joint pain, carpel tunnel syndrome 🔵 Snoring, sleep apnea 🔵 Weight gain 🔵 Deepening of voice 🔵 Frontal bossing 🔵 Enlarged jaw and tongue, teeth spacing 🔵 Loss of libido, fertility issues 🔵 Excessive sweating 🔵 Swelling of facial features 🔵 Thickened, oily skin What else should you know about acromegaly? 🤔 🗣️ As one patient advocate stated, “I wish all people realized that for me and many others it is a chronic disease with many comorbidities.” This condition comes with invisible disabilities and visible changes to the body that should be considered. 😔 It is also associated with various comorbidities such as high blood pressure, diabetes mellitus and arthritis, which can impact a patient’s quality of life and life expectancy. 🩺 There is an urgent need for early disease recognition in the medical community and general public to avoid poor long-term outcomes. Finally, Acromegaly Awareness Day is November 1st, so stay tuned for more content on this pituitary condition starting next week. 📅 Please help raise awareness for acromegaly by liking, saving and sharing this post so that it reaches the most people possible! 🫶 💻 To view and download the full poster for acromegaly, find it on the WAPO website here: https://lnkd.in/eie9hv7e . That is the end of our Walk with WAPO series! We hoped you like it and that you learned something new. 🤓 We thank the patient advocates who provided their personal quotes for our series, because listening to those with lived experience is the best way to learn and improve outcomes for others. 💖 #pituitaryawareness #acromegaly #Acromegalyawareness #pituitarygland #pituitaryawarenessmonth

ACRO-talks - Episode 2: Living with acromegaly https://lnkd.in/gCRm7UPn

Acromegaly in the spotlight https://lnkd.in/e2y4bNy3

This Friday, November 1st, is Acromegaly Awareness Day! 📅 To mark this important day, we’ve created a special video that invites you to walk with WAPO through the experiences of people living with acromegaly. 🚶♀️ Watch it here: https://lnkd.in/eBgE5Xww In this video, you’ll meet 9 inspiring patient advocates from around the world 🌍, who share their parts of their stories through a series of chapters, including: 🟢 Their first symptoms 🟢 Their journey to diagnosis 🟢 Their feelings and concerns upon diagnosis 🟢 Their treatment 🟢 The impact of acromegaly on their lives and those of their loved ones ➕ And more... Each story is unique, and every experience matters. No two journeys with acromegaly are the same, but all of them share a common wish: better recognition of acromegaly so that patients can receive a faster diagnosis and start their path to better health. We hope that the long journeys to diagnosis described by many in this video will soon be a thing of the past and that new treatments will bring a better quality of life to everyone living with this rare disease. A heartfelt thanks to David, Donna, Jeremie, Marell, Marie Louise, Martin, Mayulabis, Roz, and Sandra for sharing their stories so openly. 💕 Please help share this video on November 1stand beyond to spread awareness. Whether you're living with acromegaly, know someone who is or just want to show you support, a like or share will allow this video to reach more people! Together, we can make a difference for acromegaly patients and their families! 💪❤️ #Acromegaly #AcromegalyAwareness #RareDisease #StrongerTogether #AwarenessDay Acromegaly Community Acromegaly Canada Acromégales, pas seulement... Pituitary Ireland The Pituitary Foundation PITUITARY WORLD NEWS

November 1st Acromegaly Awareness Day. Sharing to raise awareness of this rare disease.

"Walk with WAPO" zur Sensibilisierung für den Akromegalie-Tag am 1. November...🥁! Heute stellen wir Ihnen eine Infografik zur Verfügung, um mehr über Akromegalie zu erfahren! 🫶 Akromegalie ist eine seltene Erkrankung, die durch eine übermäßige Produktion von Wachstumshormon verursacht wird und meist auf einem Wachstumshormon produzierenden Hypophysenadenom (gutartiger Tumor der Hirnanhangsdrüse) beruht. 📈 Die Symptome umfassen 🔵 Kopfschmerzen 🔵 Vergrößerung von Händen und Füßen (Ringe passen nicht mehr 💍, Zunahme der Schuhgröße 👟) Gelenkschmerzen, Karpaltunnelsyndrom Schnarchen, Schlafapnoe Gewichtszunahme 🔵 Vertiefung der Stimme 🔵 Stirnhöcker 🔵 Kiefer- und Zungenvergrößerung, Zahnlücke 🔵 Libidoverlust, Fruchtbarkeitsstörungen 🔵 Übermäßiges Schwitzen 🔵 Aufgedunsene Gesichtszüge Verdickte, fettige Haut Was sollten Sie sonst noch über Akromegalie wissen? 🤔 🗣️ Ein Patientensprecher sagte: "Ich wünschte, alle Menschen würden verstehen, dass es sich bei mir und vielen anderen um eine chronische Krankheit mit vielen Begleiterkrankungen handelt". Diese Krankheit geht mit unsichtbaren Behinderungen und sichtbaren Veränderungen des Körpers einher, die berücksichtigt werden sollten. Sie geht auch mit verschiedenen Begleiterkrankungen wie Bluthochdruck, Diabetes mellitus und Arthritis einher, die die Lebensqualität und die Lebenserwartung der Patienten beeinträchtigen können. Es besteht ein dringender Bedarf an einer Früherkennung der Krankheit durch die medizinische Gemeinschaft und die Öffentlichkeit, um schwerwiegende Langzeitfolgen zu vermeiden. Schließlich ist der 1. November der Tag der Akromegalie. Bleiben Sie also dran, wenn Sie in den nächsten Tagen mehr über diese Hypophysenerkrankung erfahren möchten.

"Camina con WAPO" para concienciar sobre el Día de la Acromegalia el 1 de noviembre ...🥁 ¡Hoy compartimos una infografía para que conozcas más sobre la acromegalia! 🫶 La acromegalia es un trastorno raro causado por una producción excesiva de la hormona del crecimiento, la mayoría de las veces como resultado de un adenoma hipofisario (tumor benigno de la glándula pituitaria) secretor de la hormona del crecimiento. 📈 Los síntomas incluyen: 🔵 Dolores de cabeza 🔵 Agrandamiento de manos y pies (anillos que ya no caben 💍, aumento del número de calzado 👟) 🔵Dolor en las articulaciones, síndrome del túnel carpiano. 🔵 Ronquidos, apnea del sueño 🔵 Aumento de peso 🔵 Engrosamiento de la voz 🔵 Protuberancia frontal 🔵 Agrandamiento de la mandíbula y la lengua, separación de los dientes 🔵 Pérdida de la libido, problemas de fertilidad 🔵 Sudoración excesiva 🔵 Hinchazón de los rasgos faciales 🔵 Piel engrosada y grasa ¿Qué más hay que saber sobre la acromegalia? 🗣️ Como afirmó un defensor del paciente: "Ojalá toda la gente se diera cuenta de que para mí y para muchos otros es una enfermedad crónica con muchas comorbilidades." Esta condición viene con discapacidades invisibles y cambios visibles en el cuerpo que deben ser considerados. 😔 También se asocia a diversas comorbilidades como hipertensión, diabetes mellitus y artritis, que pueden repercutir en la calidad y esperanza de vida del paciente. 🩺 Es urgente que la comunidad médica y el público en general reconozcan pronto la enfermedad para evitar malos resultados a largo plazo. Por último, el Día de la Concienciación sobre la Acromegalia es el 1 de noviembre, así que permanezca atento a los próximos contenidos sobre esta enfermedad hipofisaria.

"Walk with WAPO" to raise awareness for Acromegaly Day November 1st ...🥁 Today we share an infographic to help you learn about acromegaly! 🫶 Acromegaly is a rare disorder caused by an excessive production of growth hormone, most often resulting from a growth hormone-secreting pituitary adenoma (benign tumor of the pituitary gland). 📈 Symptoms include: 🔵 Headaches 🔵 Enlarged hands and feet (rings no longer fitting 💍, increase in shoe size 👟) 🔵Joint pain, carpel tunnel syndrome 🔵 Snoring, sleep apnea 🔵 Weight gain 🔵 Deepening of voice 🔵 Frontal bossing 🔵 Enlarged jaw and tongue, teeth spacing 🔵 Loss of libido, fertility issues 🔵 Excessive sweating 🔵 Swelling of facial features 🔵 Thickened, oily skin What else should you know about acromegaly? 🤔 🗣️ As one patient advocate stated, “I wish all people realized that for me and many others it is a chronic disease with many comorbidities.” This condition comes with invisible disabilities and visible changes to the body that should be considered. 😔 It is also associated with various comorbidities such as high blood pressure, diabetes mellitus and arthritis, which can impact a patient’s quality of life and life expectancy. 🩺 There is an urgent need for early disease recognition in the medical community and general public to avoid poor long-term outcomes. Finally, Acromegaly Awareness Day is November 1st, so stay tuned for more content on this pituitary condition starting next week. 📅 Please help raise awareness for acromegaly by liking, saving and sharing this post so that it reaches the most people possible! 🫶 💻 To view and download the full poster for acromegaly, find it on the WAPO website here: https://lnkd.in/eie9hv7e . That is the end of our Walk with WAPO series! We hoped you like it and that you learned something new. 🤓 We thank the patient advocates who provided their personal quotes for our series, because listening to those with lived experience is the best way to learn and improve outcomes for others. 💖 #pituitaryawareness #acromegaly #Acromegalyawareness #pituitarygland #pituitaryawarenessmonth

This Friday, November 1st, is Acromegaly Awareness Day! 📅 To mark this important occasion, we’ve prepared a special video that invites you to walk with WAPO through the experiences of people living with acromegaly. 🚶♀️ Watch it to get ready for Acromegaly Awareness Day, here: https://lnkd.in/eBgE5Xww In this video, you’ll meet 9 incredible patient advocates from countries all across the world 🌍 who will share their parts of their stories through a series of chapters, including: 🟢 Their first symptoms 🟢 Their journey to diagnosis 🟢 Their feelings and concerns upon diagnosis 🟢 Their treatment 🟢 The impact of acromegaly on their lives and those of their loved ones ➕ And more... Each story is unique, and every experience matters. While no journey with acromegaly is alike, one common wish is shared among all: better recognition of acromegaly in the medical community so that patients can receive a timely diagnosis. Our hope is that diagnostic odysseys will become a thing of the past and that new treatments will improve the quality of life for everyone living with this rare disease. A special thanks to David, Donna, Jeremie, Marell, Marie Louise, Martin, Mayulabis, Roz, and Sandra, the faces and voices of of this video, for their courage and generosity in sharing their stories. 💕 We encourage you to share this video on November 1st (and throughout the year) to help us raise awareness! Together, we can improve the journey for acromegaly patients and their families. 💪❤️ The Pituitary Foundation Acromegaly Community Acromegaly Canada Acromégales, pas seulement... #Acromegaly #AcromegalyAwareness #RareDisease #StrongerTogether #AwarenessDay #WAPO