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"WE ARE KAKS."

We all had retinoblastoma

Survivor

As a survivor, HERE is the right place for you.
We want to give you the opportunity to get in touch with other RB survivors, exchange valuable experiences, get important information – or simply make friends and meet like-minded people.
We regularly organize meetings for survivors over 18 and this much can be revealed: they are always very special weekends, at the end of which everyone finds it very difficult to say goodbye to each other.

If you like, you can also become a MUTMACHER with us.

WHAT IS AN ENCOURAGER?

Who are we and what do we do?
Does being courageous have anything to do with being brave?
If we look at the courage stories, you might think yes.
What unites us in any case is that we all have the courage to talk about ourselves and our illness. Because we actually have this in common: we all had a RB as a child.
Our lives are very different, we have different professions, talents and characters.

Stories that count

Through our commitment as encouragers at KAKS, we want to show that we are “completely normal people” and thus encourage others who are affected! Each and every one of us has had very different experiences and through the Encouragers we have an opportunity to pass on this knowledge to families who are acutely affected.

“As a unit, we exchange ideas, give each other support and, above all, have a lot of fun together.”

Encourager
KAKS team

You give that

Parents in particular often have many unanswered questions, are worried about their child’s future, want practical tips, or simply want to see how an adult lives after an RB disease.

Powerful moments that give courage

Many children also find it fascinating to meet someone who also has a “magic eye” – sometimes a very special relationship develops after just a few moments.
As an encourager, you share your personal experiences and act as a point of contact.

BECOME AN ENCOURAGER ; )

What you win

Being an Encourager or a Survivor at KAKS is a great way to make new friends, network and learn more. We also exchange ideas with each other and tell each other our own individual stories. Rich in courage.
Giving courage.
Gaining courage.
Dare to speak.

In addition to the regular retinoblastoma meetings, which are attended by children and parents, there are also regular encouragement meetings. Working with trained coaches, we learn a lot about ourselves, our limits and how to conduct conversations.
But we also learn a lot FOR ourselves and benefit enormously from the exchange with each other, both personally and medically.

Take courage!
Become an encourager 👋

Do you have retinoblastoma yourself and would like to talk to other people affected?
Or maybe even encourage others?
Then get in touch with us:

WE LIVE LIFE

Our encouraging heroes – stories that touch hearts.

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Weitere Informationen

Giving courage - living with RB

"A life with an RB is definitely a life worth living."

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Weitere Informationen

Giving courage - living with RB, part II

"There were moments when I was very sad."

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Weitere Informationen

Giving courage - living with RB

"I can do more than people give me credit for."

Sie sehen gerade einen Platzhalterinhalt von YouTube. Um auf den eigentlichen Inhalt zuzugreifen, klicken Sie auf den Button unten. Bitte beachten Sie, dass dabei Daten an Drittanbieter weitergegeben werden.

Weitere Informationen

Retinoblastoma Survivors Part IV

"And then I took the eye out and threw it around."

Sie sehen gerade einen Platzhalterinhalt von YouTube. Um auf den eigentlichen Inhalt zuzugreifen, klicken Sie auf den Button unten. Bitte beachten Sie, dass dabei Daten an Drittanbieter weitergegeben werden.

Weitere Informationen

Retinoblastoma Survivors Part V

"A life with an RB is definitely a life worth living."

Sie sehen gerade einen Platzhalterinhalt von YouTube. Um auf den eigentlichen Inhalt zuzugreifen, klicken Sie auf den Button unten. Bitte beachten Sie, dass dabei Daten an Drittanbieter weitergegeben werden.

Weitere Informationen

Retinoblastoma Survivors Part VI

"I didn't meet other people with RB until I was 21. That was very emotional."

GREAT PEOPLE

And each a hero in their own right.

Alena P.

Alena S.

Benedict

Bodo

Buba

Cedric

Charlotte

Elena

Franziska

Frederik

Hans

Ina

Isy

Jana

Jenny

Julia

Katrin

Laura

Lena

Marcel

Marie

Martin

Maximilian

Monique

Muriel

Nele

Ramona

Rebecca

Sebastian

Stefan

Tanja

Theresa

Uta

Vanessa

RB in Lebanon

A harrowing report from a victim. We have been in close contact with Lynn Tarabey from Beirut for many years. We were very moved by her story …

Letters to you

We would like to thank our survivors and encouragers for the valuable thoughts they share with the KAKS family, which are so personal, honest and yet always full of hope.

OFFERS
Dates

With empathy and joint meetings and activities, we give confidence and new rays of hope.
By those affected for those affected – because real experience, informative exchanges and networking connect and strengthen.

Every first Monday of the month from 8 pm

Talking, listening, sharing.
Valuable impulses that provide orientation in difficult situations. We look forward to seeing you.

Have you just received a diagnosis of RB for your child?
Are you affected yourself?
Would you like to get in touch with other families and people affected in your area?
Do you need help or just someone to listen to you?
Would you like to know how others live with the diagnosis?
Are you afraid of what lies ahead for you?
Or are you doing well despite your illness and have a positive story to tell?

With the KAKS Stammtisch we want to create a platform for exchange, listen to you, share experiences – in a relaxed atmosphere. At the KAKS Stammtisch there is always either an encourager, a family whose child fell ill a long time ago and who shares their experiences with us, or one of the KAKS team.
Just click in, listen and join in.

Important: The link leads you directly to the meeting, pre-registration is not necessary.
Please switch on your camera and microphone.
We look forward to seeing you!

CONTACT
Elli's Eyeland

Elli’s Eyeland by KAKS 👋

If you would like to visit us – we would be delighted!
Please register in advance by e-mail.
And: if you would like to write to us, this is our address where all submissions will be processed confidentially.
📬 Dr. Winter, Elli’s Eyeland, Wiesenstrasse 32, 40549 Düsseldorf

Elli’s Eyeland by KAKS 👋

The RB-World app in the App Store and on Google Play!
There you can find each other, exchange ideas and collect valuable information.

Further information

Our
team

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Subscribe to KAKS Newsletter

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Our
YouTube channel

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