About
The Voice for
Epilepsy
0
%
feel a lack of information and resources are barriers to accessing support or treatment
they need
0
%
of people with epilepsy experience stigma, ranging from subtle biases to significant misunderstanding.
0
in 3
Nearly 2 in 3 people emphasise the urgent need for more community support and understanding to improve their quality of life
Our Story:
From Lived Experience
to Purposeful Change
Epilepsy is one of the most misunderstood and underrepresented conditions in society. People don’t talk about it enough. The stigma forces many to suffer in silence, afraid to disclose their diagnosis at work, in school or even among friends.
Epilepsy affects over 600,000 people in the UK—that’s one in every 100 people—yet, many still face challenges with their epilepsy diagnosis—battling
stigma, discrimination and widespread misunderstanding.
The Voice for Epilepsy believes that no one should feel unheard, unsupported or alone in their epilepsy journey.
We are here to change that.
True to our name, we exist as The Voice for Epilepsy—the voice that
speaks when yours feels unheard. We stand beside you on your
epilepsy journey, break down stigma and ensure you feel
understood, supported and valued.
Championing your experiences and your future, we challenge
outdated epilepsy perceptions and stigma.
We are more than just a charity—we are a community, a
movement and a voice for change. Contact us to learn more
Whether you’re living with epilepsy or caring for someone who is, we
welcome you.
Raising Epilepsy
Awareness,
Creating Change
Pushing for conversations that matter, The Voice for Epilepsy wants companies, sponsors and
decision-makers to recognise the importance of epilepsy awareness because this condition can affect anyone at any time.
In the UK, epilepsy is still not talked about enough. Our main focus is to change that—to raise awareness and ensure epilepsy is seen, heard and recognised everywhere. Too many people feel silenced by fear and we are here to change that.
Through education, we ensure that schools, workplaces and
policymakers truly understand epilepsy—transforming knowledge
into meaningful action.
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Sign up for our newsletter to receive
updates on our latest campaigns,
upcoming events and ways to get
involved.
Epilepsy is one of the most misunderstood and underrepresented conditions in society. People don’t talk about it enough. The stigma forces many to suffer in silence, afraid to disclose their diagnosis at work, in school or even among friends.
Kasam Parker – Founder of The Voice For Epilepsy.
Our Story: From Lived Experience to Purposeful Change
My name is Kasam Parkar and I am the founder of The Voice for Epilepsy. I have been living with epilepsy since I suffered my first seizure at the age of 23. It took nearly two weeks in hospital before I was even diagnosed—an experience that far too many others can still relate to.
Since then, epilepsy shaped my life in ways I never expected. My new normal consisted of hospital visits, ambulance rides, injuries and a constant balancing act with medication. Over the years, I have suffered a broken nose, a fractured shoulder, deep cuts to my forehead and most painfully, I lost over five years of my memory due to seizures.
But epilepsy is more than just the physical injuries—it also began to distance me from the life I once enjoyed. The unpredictability of my seizures and the stigma attached to epilepsy made many aspects of life more difficult.
Until I decided that I refuse to let epilepsy silence me.
Through years of trial and error with medications, doctors and lifestyle changes, my seizures are now controlled. Although I still experience exhausting seizure clusters, I know firsthand how isolating epilepsy can be and I want to turn my pain into purpose.
I founded The Voice for Epilepsy to:
- Make epilepsy visible: because no one should have to hide their condition.
- Provide a platform: those living with epilepsy can share their experiences and feel heard.
- Educate and support: ensuring that schools, workplaces and policymakers understand epilepsy and take real action.
- Combat stigma: so that epilepsy is no longer something people are afraid to talk about.
The Voice For Epilepsy is a charity, created to build a community where people can connect, feel safe and access the resources they need. For the millions of people who feel unseen, unheard and unsupported, I want to challenge perceptions, spread educational awareness and ensure epilepsy gets the attention it deserves.
What Makes The Voice For Epilepsy Different?
There are many epilepsy charities out there, but what makes us unique?
- We are small enough to care. We aren’t a faceless organisation—we are real people, deeply invested in this cause. Every story matters to us.
- We listen and we act. We don’t just talk about epilepsy; we fight for real change and practical solutions.
- We lobby for change. We work with decision-makers to ensure epilepsy is on the national agenda.
- We believe in action over words, impact over intention and community over everything.
Stay Updated!
Sign up for our newsletter to receive
updates on our latest campaigns,
upcoming events and ways to get
involved.
Our Impact: The Truth About Epilepsy in the UK
We don’t just advocate—we collect data, conduct research and shine a light on the real experiences of those living with epilepsy.
From our latest survey:
- 9% of people with epilepsy experience stigma, ranging from subtle biases to significant misunderstanding.
- Nearly 2 in 3 people emphasise the urgent need for more community support and understanding to improve their quality of life
- 5% feel a lack of information and resources are barriers to accessing support or treatment they need.
“All illness is stigma nowadays – weakness is stigmatised.”
Anonymous Survey Participant –
These statistics are unacceptable. We refuse to ignore them.
Source: The Voice for Epilepsy, Anonymous Community Survey, 2025.
Join the Movement – Get Involved!
This is more than a cause. This is a movement.
What Sets The Voice for Epilepsy Apart?
Epilepsy should no longer be a hidden condition. Together, we can make sure that
everyone living with epilepsy feels seen, supported and empowered.
We are small enough to care
We aren’t a faceless organisation—we are real people, deeply invested in this cause. Every story matters to us.
We listen and we act
We don’t just talk about epilepsy; we fight for real
change and practical solutions.
We lobby for change
We work with
decision-makers to ensure
epilepsy is on the national
agenda.
We believe in action over words
Impact over intention and community over everything.
Our Mission:
Standing Up For Those
Who Need It Most
The Voice for Epilepsy is committed to creating a world where no one living with epilepsy feels unheard, isolated, unsupported, or misunderstood.
Our mission is simple yet powerful:
To raise awareness
because knowledge leads to understanding.
To provide support
because no one should face epilepsy alone.
To push for real change
because the epilepsy community deserves better.
Every day, we work to break down the barriers that people with epilepsy face, whether that’s in
the workplace, in healthcare, in schools, or in society as a whole. Epilepsy is more than just seizures—it’s a life-changing condition that affects mental health, relationships, careers and confidence. We will not stop until the world listens.
Our Vision:
A future where epilepsy is truly understood
We dream of a world where epilepsy is no longer a condition that’s misunderstood and overlooked. A world where people with epilepsy are treated with the same care, respect and dignity as anyone else.
A world where:
To raise awareness
because knowledge leads to understanding.
To provide support
because no one should face epilepsy alone.
To push for real change
because the epilepsy community deserves better.
Until that world becomes a reality, we will keep fighting.
- No one is afraid to disclose their condition at work.
- Children with epilepsy are fully supported in school.
- Mental health services are accessible and tailored to the epilepsy community.
- Medical care prioritises patient voices.
- Government policies reflect the real needs of those living with epilepsy.
- Cultural divides, ethnicity and background do not determine the level of understanding, support, or treatment a person receives.
Until that world becomes a reality, we will keep fighting.
Our Values:
The foundation of our work
Shaping the way we support, raise awareness and drive change for the epilepsy community, our values drive us every day as we strive to make epilepsy better understood, better supported and better represented in society.
Our mission is simple yet powerful:
Compassion
We lead with empathy, always listening, always caring. Every person’s experience with epilepsy matters and we are here to ensure no one faces their journey alone.
Inclusivity
Epilepsy knows no boundaries and neither do we. We are committed to reaching and supporting everyone, regardless of age, ackground, ethnicity or circumstance.
Action
Awareness is only the first step. We believe in turning words into meaningful action, pushing for policy change, better healthcare and greater public understanding.
Integrity
We stand by our commitments and remain transparent in all we do. Trust is at the heart of our work, and we will always act in the best interest of the epilepsy community.
Our Impact:
The Truth About Epilepsy in the UK
We don’t just advocate—we collect data, conduct research and shine a light on the real experiences of those living with epilepsy.
From our latest survey:
74.9% of people with epilepsy experience stigma, ranging from subtle biases to significant misunderstanding.
Nearly 2 in 3 people emphasise the urgent need for more community support and understanding to improve their quality of life
66.5% feel a lack of information and resources are barriers to accessing support or treatment they need.
“All illness is stigma nowadays – weakness is stigmatised.”
– Anonymous Survey Participant –
These statistics are unacceptable. We refuse to ignore them.
Source: The Voice for Epilepsy, Anonymous Community Survey, 2025.
Join the Movement – Get Involved!
This is more than a cause. This is a movement.