Acromegaly - Philippines

17/08/2025

Acromegaly Philippines participated virtually in the Acromegaly Regional Meeting held in Detroit, Michigan in the United States hosted by the Acromegaly Community Inc. (USA)

Thank you for a meaningful and informative discussion about Acromegaly. Let us continue to be an advocate and to raise awareness about this Rare Disease. We thank Mrs. Jill Sisco, the President of Acromegaly Community Inc. for organizing such events like this which truly helps patients worldwide.

01/08/2025

What exactly is the pituitary gland, and why does it matter?

In this episode of Pituitary 101, Dr. Lewis Blevins walks you through the basics of pituitary function and the key tests used to evaluate hormone health. Whether you're newly diagnosed or just curious, this is your starting place for understanding the "master gland."

🎥 Watch now at https://bit.ly/4fjJh6a

28/07/2025

Click the link below to listen to the Episode 23 of AcroTales, featuring one of the youngest Acromegaly patients in the Philippines diagnosed at the age of 19.

https://acrotales.com/jeremie/

28/07/2025

25/07/2025

04/07/2025

Acromegaly - Philippines would like to extend our greetings to Philippine Society for Orphan Disorders Incorporated on its 19th Founding Anniversary! 🥳

Join us as we celebrate 19 years as one Filipino community. Share and post your greeting or wish for PSOD on its 19th Founding Anniversary

The Philippine Society for Orphan Disorders is a non-stock, non-profit organization that was organized in 2006 to support the geneticists and health professionals of the Institute of Human Genetics - NIH University of the Philippines Manila in achieving access to medical treatment and supportive care of patients with rare disorders.

With the help of its partners, PSOD endeavors to be the central network for the advocacy and effective coordination of all viable efforts to sustain a better quality of life for individuals with orphan or rare disorders in the Philippines.

Learn more about PSOD by visiting our website, https://psod.org.ph/

How you can help the PSOD? visit https://www.psod.org.ph/help/ for more details.

25/05/2025

Good News! World Health Assembly adopts Rare Disease Resolution

Member States today adopted a landmark resolution declaring rare diseases a global health priority in an effort to ensure that no patients are left behind.

The Resolution recognizes that over 300 million people globally live with one of more than 7000 rare diseases, most of which begin in childhood and can lead to significant physical, emotional, and financial hardship.

The Resolution also urges countries to integrate rare diseases into national health planning, improve diagnosis and care through universal health coverage, promote inclusive policies, and accelerate innovation, research, and access to affordable treatment. Importantly, it mandates the World Health Organization to develop a comprehensive 10-year global action plan on rare diseases, with measurable targets to guide progress toward equity, inclusion, and access to care for all affected individuals.

References Rare Diseases International
https://www.rarediseasesinternational.org/wha-resolution-on-rare-diseases-adopted/
https://www.who.int/news/item/24-05-2025-seventy-eighth-world-health-assembly---daily-update--24-may-2025

29/04/2025

Acromegaly - Philippines stands with the Philippine Society for Orphan Disorders (PSOD) in celebrating the Global Undiagnosed Day 2025!

Acromegaly - Philippines believes that there are still a lot of Acromegaly patients not just in the Philippines but in the entire world who are still undiagnosed.

Let us all stand strong in advocating and promoting for early and proper diagnosis of rare diseases. Proper diagnosis can lead to proper medical intervention by our medical professionals that can manage and control our symptoms.

Today, we stand together to honor and support the millions around the world living without a diagnosis.

This year's theme for Global Undiagnosed Day is "Intentional Disruption."

Global Undiagnosed Day shines a light on the intricate journey of diagnostic uncertainty. It emphasizes the need for innovative research, improved diagnostic tools, and enhanced patient support systems. The hope is that by coming together on this day, the global community can push for advancements that lead to timely diagnoses and more effective treatments, ensuring that no one suffers in silence amidst the unknown

In healthcare, disruption should ultimately result in improved health and will likely include at least one of the following: enhanced efficiency; more effectively treating or curing a disease; reduced cost of a service; expanded access; and accelerating a treatment or diagnosing an illness at a stage, price or mode previously impossible or at least impractical.

This year's theme also reminds us of the power of health research, advocacy, and unity in overcoming barriers in healthcare and medical discovery. By sharing stories and raising awareness, we can ignite progress and give strength to every individual searching for answers.

Read more at https://rareundiagnosed.org/undiagnosed-rare-disease-day-april-29-2025/

25/04/2025

World Hormone Day 2025

A vital reminder of the powerful role hormones play in our health and well-being.

This year’s theme, “Hormones: In Balance, In Health”, encourages awareness, early diagnosis, and equitable access to care for all people living with hormone-related conditions.

Let’s work together to:
• Raise awareness about endocrine disorders like Acromegaly, Adrenal Deficiency, AVP-Deficiency, Cushing's, GH Deficiency, Sheehan's disease and other hormone disorders
• Support those living with lifelong hormone conditions
• Advocate for better access to diagnosis, treatment, and care worldwide

WAPO | Raising Awareness for Pituitary Conditions

14/03/2025

2025 Vlog 2 – Pituitary Gigantism: Acromegaly in Children and Adolescents

Today, WAPO has launched the second Blog & Vlog of 2025, regarding ‘Pituitary Gigantism: Acromegaly in Children and Adolescents’, which feature a video interview and blog with key takeaways and extra resources, with Professor Márta Korbonits, from Barts and London School of Medicine at Queen Mary University of London.

Professor Korbonits is an expert in pituitary gigantism and its genetic causes. In the blog & vlog, Professor Korbonits explains how this very rare disease is diagnosed and treated and the importance of early multidisciplinary management. She also talks about the key elements required for a successful transition from pediatric to adult care and how to ensure the best outcomes for patients.

Acromegaly in Children and Adolescents  is the second video of the 2025 WAPO Blogs and Vlogs series.In this edition we are lucky enough to be joined by Profe...

03/03/2025

This year, RA 10747 or the Rare Diseases Act of the Philippines turns 9

Signed on 03 March 2016, a milestone which coincides with , the enactment of Republic Act 10747 or the Rare Diseases Act of the Philippines signifies the institutionalization of providing assistance and access to Filipinos living with a rare disease towards comprehensive medical care. This act emphasizes the importance of addressing the unique medical needs of Filipinos living with a rare disease to improve their quality of life.

RA 10747 aims to improve the healthcare system for individuals with rare diseases. The law seeks to “improve the access of patients diagnosed to have a rare disease, or patient highly suspected of having a rare disease, to comprehensive medical care and to timely health information to help them cope with their condition.” The law also mandates the creation of a comprehensive program for early diagnosis, treatment, and management of rare diseases.

While nine years have passed, the full benefits of the law remain to be materialized for Filipinos living with a rare disease.


Rare Disease Day

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Related links:

Noy signs law aimed at helping people with rare disease (Philippine Star, 05 March 2016)
https://www.philstar.com/headlines/2016/03/05/1560079/noy-signs-law-aimed-helping-people-rare-disease

ANGARA LAUDS SIGNING OF RARE DISEASES ACT
https://legacy.senate.gov.ph/press_release/2016/0308_angara1.asp

Get to know the 10 key provisions of the Rare Diseases Act of the Philippines, RA10747 (VYLH-Philippines)
https://vylhphilippines.blogspot.com/2016/03/get-to-know-10-key-provisions-of-rare.html

DoH addresses rare diseases (Business World, 02 March 2017)
https://www.bworldonline.com/health/2017/03/02/9499/doh-addresses-rare-diseases/

UP Manila Chancellor calls for a more inclusive Rare Disease Act (UP Manila Healthscape, 15 September 2022)
https://www.upm.edu.ph/cpt_news/up-manila-chancellor-calls-for-a-more-inclusive-rare-disease-act/

PhilHealth expands benefits to cover rare diseases, mobility devices (Philippine Daily Inquirer, 04 December 2024)
https://newsinfo.inquirer.net/2012174/philhealth-expands-benefits-to-cover-rare-diseases-mobility-devices

28/02/2025

Today, February 28th, we celebrate the Global Rare Diseases Day 2025!

Acromegaly is a type of rare disease which affects 30-60 patients in a million population. In the Philippines, there are only few cases known, but there are still a lot of patients who are either misdiagnosed or still remains undiagnosed. This video will show stories of Acromegaly patients around the globe.

Let us continue to spread awareness about rare diseases such as Acromegaly. Be an advocate and show support to our community. Please like and follow our page!

Thank you, Chiesi Global Rare Diseases for making this possible!