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2024 WAPO Blogs and Vlogs: Mid-Year Recap and What’s Coming Next

As we approach the halfway mark of 2024, we thought it would be the perfect time to provide a comprehensive recap of the 2024 WAPO Blogs and Vlogs series and give you a preview of what’s coming this fall. Whether you are a patient, healthcare professional, or someone simply interested in learning more about pituitary disorders, there is something for everyone!

Topics already covered to date: catch up on what you missed

We started the year with an informative blog article on Navigating Nutrition and Pituitary Disorders in January. This blog explored the pituitary gland and its hormones, the role that diet plays in maintaining hormone health and shared recommendations to help balance your hormones and improve your overall wellbeing when living with a pituitary disorder.

In February, we released the first vlog on the topic of what makes a successful patient-healthcare professional relationship? This video featured Els Rutten, a genetic counselor and endocrine nurse, who shared what she believes to be the foundation of a successful relationship between patients and healthcare professionals. She provided useful tips for healthcare professionals and provided examples of the positive effects that making some changes can have on patients and their families. This video goes beyond the pituitary community as her advice is invaluable to all healthcare professionals wishing to improve their patients’ experience and quality of life.

Watch it again on the WAPO YouTube channel in either English or Spanish.  You can also find them in the WAPO library.

In March, Clive Deverson shared important information and resources covering a topic that is of great interest to the patient community: Collaborations between Patient Advocacy Groups and Pharmaceutical Companies.  He detailed the restrictions and challenges facing the pharmaceutical industry when it comes to working with patients as well as current trends in this area. He equally shared several toolkits and resources that patient organizations can refer to for their future collaborations with the pharmaceutical industry.

In April we were joined by Patricia Gildroy for a vlog entitled Shining Light on Arginine Vasopressin Deficiency (AVP-D)/ Central Diabetes Insipidus. Patricia is lead administrator for the Facebook group Got Diabetes Insipidus? Got Arginine VasoPressin Deficiency (AVP-D) or Resistance? And in this video she shared her personal story with AVP-D, how to avoid potential complications, and the need to better inform healthcare professionals of AVP-D, as it is still frequently confused with diabetes mellitus. This video is a great one to share in order to raise awareness for this rare disease.

Watch it again on the WAPO Youtube channel in either English or Spanish. You can also find them in the WAPO library.

For the next blog article, which was released in May, we outlined our Top Tips for Travelling with a Pituitary Disorder. This article gives patients with pituitary disorders a useful guide to ensure their travels are as stress-free as possible. From what important documents to bring (such as emergency cards, a medication passport or other awareness material) to adjusting to a new time zone, it’s the perfect article to read before and during your summer vacation this year.


Preview of what’s still to come: sneak peak

 Coming August 29th, 2024 we will release our 3rd vlog entitled Cushing syndrome comorbidities: priorities for patients vs. priorities for the healthcare professional. This is one you will not want to miss as we will have the unique perspectives of both an endocrinologist (Dr. Noa Tal) and a patient (Ms. Haleh Sharafi) on the comorbidities that are associated with this condition and how they have an effect on a patient’s quality of life.

The first blog this fall will be on the topic of Gigantism and Acromegaly: Long term consequences after the disease is “cured”. Diagnosis and treatment are just two parts of a patient’s journey with these pituitary disorders and we will cover the long term consequences that equally need to be considered and managed.

Then in October we will release a vlog on the topic of Thriving during pregnancy and Motherhood with a pituitary disorder. The Maternal Pituitary Support group will share their experience and provide valuable information and support for expectant mothers and mothers living with a pituitary disorder. This will be an enlightening video for anyone interested in maternal health, fetal development and the complexities of hormonal balance for women with a pituitary disorder.

In November, we will publish a blog article on why raising awareness for pituitary disorders is so important. Expect an informative article on why these disorders deserve more attention, how sharing knowledge can literally save lives, and how to spread the word to your community.

Finally to end the year, we will present a vlog that explores acromegaly in a unique way, with the participation of several members of the WAPO patient and medical community. You can access a wealth of information on acromegaly or other pituitary disorders on our website. That is all we will reveal for the moment, but it will definitely be a vlog that is worth the wait.

Now that you’re up to date with our mid-year recap, we hope you are as excited as we are about the upcoming content in the WAPO Blogs and Vlogs series for 2024. We have tried to cover a variety of pituitary disorders and topics that are of interest to our community, but please feel free to send us your feedback.

Finally, as a reminder, this year we also created the WAPO YouTube channel so that our videos could reach a larger audience. If you haven’t already, please subscribe to our channel in order to be the first to see the new vlogs released. We also encourage you to follow us on website WAPO.org as well as our social media accounts, LinkedIn, Facebook, Instagram and X (formerly Twitter), in order to stay up to date with all of our latest news and events. Stay connected to ensure that you don’t miss out on any of the 2024 WAPO Blogs and Vlogs.

Let’s continue to explore and understand the complexities of pituitary disorders and raise awareness among health care professionals and the general public of these rare conditions. It is together that we can work towards improving the lives of people living with a pituitary disorder.  We wish you a happy and healthy summer, filled with relaxation, rejuvenation and inspiration.

 

 

 

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

Webinar on ‘Hypercortisolism’ by Dr Blevins Jr

April 27, 2023: ‘Depression and the pituitary patient: support for them and yourself’ by Linda Rio (Marriage & Family Therapist (MFT)

May 25, 2023: ‘Health Technology Assessment‘ by Realise Advocates

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

Tag Archive for: wapo

Webinar 6-2023 – Clinical Trials – Alberto Pedroncelli



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

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

Webinar 3-2023 – Hypercortisolism (ES) – Dr L Blevins jr

Adrenal Insufficiency – Study: Significant risk of COVID-19 and related-hospitalization among patients with adrenal insufficiency: A large multinational survey

Manuscript Yedinak. Ross. fendo-13-1042119

Webinar 7 – J.G. Beun – Labor and Chronic Illness