HAE Pakistan

11/08/2025

Recording Available Now
The recording of our Awareness Webinar on Hereditary Angioedema in Pakistan is now available for viewing. Don’t miss the opportunity to learn about HAE, its symptoms, diagnosis, and treatment options from experts in the field.
https://tinyurl.com/czzkf428

29/07/2025

It's on Thursday

22/07/2025

Understanding Hereditary Angioedema (HAE)

Join us for an informative webinar on Hereditary Angioedema (HAE) — a rare but serious genetic disorder. This session is designed to raise awareness, share the latest treatment options, and support those affected by HAE.Whether you're a patient, caregiver, or healthcare provider, this webinar will provide valuable insights into managing HAE and improving quality of life.

22/07/2025

🎥 Videos: The HAE Insight Series – Understanding HAE in Asia Pacific

This video series aims to increase diagnosis rates and improve healthcare providers' understanding of HAE across the Asia Pacific region.

Despite increasing awareness globally, HAE remains significantly underdiagnosed and misunderstood in many APAC countries. This video series is designed to support physicians by highlighting key symptoms, guiding differential diagnosis, and sharing real-life patient experiences that reflect the human impact of the disease.

Each video features expert insights from healthcare professionals across the region – Dr Ankur Jindal and Prof Philip Li – and powerful patient stories that emphasize the urgent need for earlier diagnosis.

Find and watch the four videos on our website 👉👉 https://buff.ly/s0DlAnS

20/07/2025

HAEi’s tip for travelling with HAE: Pack HAE Companion before you go! 👍 🌍

It’s always good to pack the right protection when traveling. For some, wearing sunscreen and a hat is enough, but for people with HAE, it can be a bit more challenging to know what to do and who to contact in the event of an attack. HAE Companion is a free app that tells you all the information you need to travel safely with HAE 📲

To get everyone a little more holiday-ready, we have an article on the website with travel tips from HAEi to give you that holiday feeling before you’ve even arrived 👉👉 https://buff.ly/r6eylvZ

17/07/2025

HAEi Principles for Good Governance: A Framework for Creating Strong and Effective Patient Advocacy Organizations 🤝

HAEi and our Member Organizations share a goal of strengthening in-country HAE groups so they can better advocate for access to diagnosis, treatment, and care for people living with HAE.

HAEi’s Principles for Good Governance is a set of simple, supportive guidelines that help our Member Organization grow, lead, and serve their communities with transparency and trust. The principles support transparent, ethical, and sustainable operations, whether the Member Organization is a registered nonprofit or an informal patient advocacy group run by a single volunteer or a full-time team.

Strong organizations are built on shared values. You can read the HAEi Principles for Good Governance here 👉👉 https://buff.ly/OeAItKQ

12/07/2025

Get on the right HAE TrackR : App helps people like you take control of your HAE for better care 🙌 📱

Life with HAE can feel like it’s all about keeping score. Records of attacks are scribbled on scraps of paper. Forgotten folders full of information on past medications. Despite all of this, doctors can be left unable to see the complete picture, which can get in the way of good care.

These are just some of the reasons patients told us they put down the notepad and picked up the phone to download HAE TrackR.

Read the article on our website and know more about why people find HAE TrackR useful in their daily lives with HAE 👉👉 https://buff.ly/sIIWwND

12/07/2025

“The human impact of HAE: What doctors don’t always see” features people with HAE from Indonesia, India, and Thailand sharing their stories of living with HAE.

This final video in the Insights Series shines a light on the impact of undiagnosed HAE and the difference a diagnosis can make.

Prof Li told HAEi that his involvement in the Insights Series was sparked by his first encounters with our HAE patients in Hong Kong—families who had suffered for years (and generations) without formal diagnosis or proper care. Their stories are the driving force behind our efforts to raise awareness, improve diagnosis, and secure treatment access.

Find the full Insights Series on our website👉👉 https://buff.ly/Ff6dLZS

05/07/2025

The 3rd video of The HAE Insight Series: Understanding HAE in Asia Pacific is “Guiding the way – information, resources, and next steps”.

In this video, Dr Ankur Jindal (India) and Prof Philip Li (Hong Kong) share their insights on how to help healthcare providers recognize HAE and join networks like ACARE.

Dr Jindal comments that healthcare professionals can’t do this alone and that global (ACARE) and in-country resources (HAESI in India) exist to provide support and education.

Find the full Insights Series on our website 👉👉 https://buff.ly/Ff6dLZS

28/06/2025

28/06/2025

HAE TrackR lived experience request 📱

We want to hear how HAE TrackR has helped you! 🙌

Perhaps the app helped you manage your HAE more effectively, or maybe it gives your doctor a better understanding of your child’s HAE.

Whatever your experience, please share it with us if you are 18 or older – tell us by completing the online form on our website 👉👉 https://buff.ly/biCISle

30/03/2025

Wishing everyone a Happy swell free Eid🙏🏻❤️