"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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More InformationGiving courage - living with RB
"A life with an RB is definitely a life worth living."
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More InformationGiving courage - living with RB, part II
"There were moments when I was very sad."
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More InformationGiving courage - living with RB
"I can do more than people give me credit for."
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More InformationRetinoblastoma Survivors Part IV
"And then I took the eye out and threw it around."
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More InformationRetinoblastoma Survivors Part V
"A life with an RB is definitely a life worth living."
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More InformationRetinoblastoma 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.
- Encourager (f)
Alena S.
- Encourager (f)
Benedict
- Encourager (m)
Bodo
- Encourager (m)
Buba
- Encourager (f)
Cedric
- Encourager (m)
Charlotte
- Encourager (f)
Elena
- Encourager (f)
Franziska
- Encourager (f)
Frederik
- Encourager (m)
Hans
- Encourager (m)
Ina
- Encourager (f)
Isy
- Encourager (f)
Jana
- Encourager (f)
Jenny
- Encourager (f)
Julia
- Encourager (f)
Katrin
- Encourager (f)
Laura
- Encourager (f)
Lena
- Encourager (f)
Marcel
- Encourager (m)
Marie
- Encourager (f)
Martin
- Encourager (m)
Maximilian
- Encourager (m)
Monique
- Encourager (f)
Muriel
- Encourager (f)
Nele
- Encourager (f)
Ramona
- Encourager (f)
Rebecca
- Encourager (f)
Sebastian
- Encourager (m)
Stefan
- Encourager (m)
Tanja
- Encourager (f)
Theresa
- Encourager (f)
Uta
- Encourager (f)
Vanessa
- Encourager (f)
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
Our KAKS regulars' table takes place all year round via Zoom.
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.