HAEi India

24/05/2026

Remember you can contribute to the challenge til 31 May 💪 any activity including walking 👣 count !!

1 more week of the hae day:-) activity challenge – still time to be in purple 💜

Even though hae day:-) was one week ago, the activity challenge is still on, and it runs to the end of May 😁 🙌

So, keep going – and add any activity you like, physical and wellbeing 📖 🏋️‍♂️ 🧘‍♀️ 🏃🌺🚴🎨🎸🙌

And keep uploading your images – we love to see your activities and the creativity of how to be in purple (and all other colors) 📷

If you haven't tried it yet, now is the time: The new hae day:-) section in our HAE Companion app makes it so much simpler to stay active, submit your activities, and be part of the challenge.

Download HAE Companion from The App Store 👉️👉️ https://buff.ly/i1Smi6H
Download HAE Companion from Google Play 👉️👉️https://buff.ly/0RNkSyG

Head over to the website to read more and be part of the challenge and the fun 👉👉 https://haeday.org/

16/05/2026

With gratitude and respect, thank you to all the doctors who continue to support the HAE community 💜

Your knowledge, compassion and commitment make a meaningful difference in the lives of patients and families living with Hereditary Angioedema (HAE).

Thank you for:
• Listening with empathy
• Supporting timely diagnosis and care
• Guiding patients through uncertainty
• Advocating for awareness and better treatment access
• Standing beside the community with kindness and dedication

For many patients, understanding from a doctor can change everything.

This HAE Day, we sincerely appreciate every healthcare professional working to improve awareness, care and quality of life for HAE patients across India.

Together, we are stronger. 💜

16/05/2026

Beyond the diagnosis: Understanding the impact of HAE 💜

Hereditary Angioedema (HAE) affects more than physical health.
For many patients and families, it impacts everyday life in ways people may not always see.

Living with HAE can involve:
• Anxiety around unpredictable attacks
• Missed school, work or social moments
• Delayed diagnosis and long medical journeys
• Emotional and financial stress
• The need for constant support and understanding

But awareness, timely care and supportive communities can make a meaningful difference.

Behind every HAE diagnosis is a person navigating uncertainty with strength, resilience and hope.

This HAE Day, let’s continue building awareness, empathy and better support for every HAE warrior and family. 💜

16/05/2026

HAE is not always visible, but its impact is very real. 💜

Hereditary Angioedema (HAE) is a rare genetic condition that causes sudden and unpredictable swelling attacks, sometimes affecting the airway and becoming life-threatening.

For many patients and families, the journey involves:
• Delayed diagnosis
• Emotional and financial stress
• Uncertainty around attacks
• The challenge of living with an invisible illness

But awareness can change lives.

With early recognition, proper treatment, supportive communities and better understanding, people living with HAE can lead full and meaningful lives.

This HAE Day, let’s continue creating awareness, empathy and support for every HAE warrior and their families.

Together, we are stronger. 💜

16/05/2026

Beyond the visible: The hidden realities of HAE 💜

HAE is not the same for every patient.

Some people face frequent attacks.
Some live with constant uncertainty.
Some struggle silently with the emotional and mental impact of a rare disease.

Things people may not realize:
• Patients often plan daily life around possible attacks
• Families and caregivers carry stress too
• Mental health can be deeply affected
• Emergency preparedness becomes part of life
• Access to awareness and specialized care is still limited for many

Living with HAE means adapting constantly — physically, emotionally and socially.

This HAE Day, let’s move beyond awareness alone and build understanding, empathy and support for every HAE warrior and family.

Because no one should face HAE alone.

15/05/2026

HAE is more than swelling.
It’s a daily reality.

For many patients living with Hereditary Angioedema (HAE), the condition affects far more than physical health.

It can mean:
• Living with uncertainty
• Rearranging daily plans around attacks
• Emotional exhaustion and anxiety
• Financial stress from ongoing care
• Feeling misunderstood because the illness is often invisible

But awareness can change that.

By learning, listening and supporting one another, we can help build a world where every HAE patient feels seen, heard and supported.

This HAE Day, let’s go beyond awareness and create understanding. 💜

PatientsFamiliesTogether

15/05/2026

💜 Something purple is coming… and it’s bigger than just a day.

This May 16, patients, caregivers, advocates and doctors across India are coming together to raise awareness about Hereditary Angioedema (HAE).

📖 Stories.
🎗 Awareness.
🤝 Support.
💜 Hope.

Stay tuned as we share patient voices, facts, activities and more leading up to HAE Day.

Because no one should face HAE alone.

StrongerTogether

10/05/2026

A great way to gently challenge oneself, easy to track your progress over this challenge & collect the weekly badges 🏆 directly in your profile ⬇️

How far are you from reaching your personal goal in the activity challenge? 💟💜

hae day:-) on 16 May is fast approaching, and so far, more than 27,000,000 steps from 43 countries and around 6,000 activities have been added to our activity challenge. This equals almost 4 trips around the world, and with a goal to beat last year's 4.1 trips, we are almost there and still have three full weeks to go! 🙌

Have you set your personal goal? If now, you can still do so – and it's easy via the new hae day:-) feature in the HAE Companion app, which also allows you to easily submit your activities to the challenge 😁 ✅️

Download HAE Companion from The App Store 👉️👉️ https://buff.ly/i1Smi6H
Download HAE Companion from Google Play 👉️👉️https://buff.ly/0RNkSyG

Read more and get a full overview of the challenge on haeday.org.

09/05/2026

We’re honoured to share that our President, Ms. Pravalika Medhuturi, represented HAE India Patients Association at the
3rd Smart Hospitals & Diagnostics Summit | 5th Patient First Summit & Awards in Hyderabad.

Pravalika has been invited to moderate Panel – Session:
“Emerging Trends in Metabolic Health: A Patient-First Approach to Prevention & Care”

We are deeply grateful to the organisers IHW Council for this opportunity and for recognising the importance of patient voices in shaping the future of healthcare. Collaborations like this help ensure that:

➡️ Care is designed with patients, not just for them
➡️ Lived experience informs policy, clinical practice, and innovation
➡️ Systems become more equitable, empathetic, and accessible – especially for those living with rare and chronic conditions

As a rare disease patient leader, Pravalika brought the perspective that every protocol, pathway, and technology must ultimately serve real people and their everyday realities.

Together, we move closer to a truly patient‑centric, patient‑first healthcare system.

30/04/2026

The 2026 Global Angioedema Leadership Conference took place in Madrid Spain where represented the Indian hae society of patients, doctors, caregivers and organisation members.

29/04/2026

Love the colours! Let's keep the momentum of for another 3 weeks til HAE day🤩

Shaibal Guha Shashwat Guha Ravleen Kaur Ravinder Kaur Ankur Jindal F***y Schappler

Week 4 of the hae day:-) activity challenge is soon coming to an end – have you entered an activity this week and added the week 4 badge to your profile? 💜

Keep going and join us in adding activities so we can beat last year's total. Remember: All kinds of activities count – physical as well as wellbeing! 📖 🏋️‍♂️ 🧘‍♀️ 🏃🌺🚴🎨🎸🙌

And keep uploading your images – we love to see your activities and the creativity of how to be in purple (and all other colors) 📷

Remember: We've made it simpler than ever to stay active, stay engaged, and be part of the hae day:-) activity challenge with a new hae day:-) section in our HAE Companion app,

Download HAE Companion from The App Store 👉️👉️ https://buff.ly/i1Smi6H
Download HAE Companion from Google Play 👉️👉️https://buff.ly/0RNkSyG

Read more and get a full overview of the challenge on haeday.org.