Wellcome to our
online support group for aortic dissection
A sudden rupture of the aorta – an aortic dissection – changes life from one moment to the next.
We know how it feels because we've experienced it ourselves. In our online support group, those affected and their families find a safe space for exchange, support, and understanding.
Together, we share experiences, give each other strength, and help each other to cope with
their new everyday lives.
About us
The online group has been running for four years, and so far, approximately 25 patients
from all over Germany have participated. Our discussion topics are as diverse as the illness
itself. Many talk about their emergency and their experiences in the hospital, about doctors
and medications. The question often arises about what else can and should be done.
We are all united by the feeling of having been given a completely new, second life. For most
of us, not only has our health situation changed, but our professional and personal lives as well. Through the exchange within the group, we can better understand and accept this new reality.
It's particularly encouraging to see how participants recover over time and regain their strength after a few months. These positive developments give us the confidence to continue our online group.
But not everyone is so lucky. Unfortunately, we have already lost participants, because long-term survival rates after aortic dissection continue to be associated with risks. This makes it all the more important that patients don't have to go this journey alone.
Our Meetings
Our online meetings take place four times a year – in March, June, September,
and December, every Thursday at 4 p.m. via Zoom. We will be happy to share
the exact dates upon request.
We are a group of patients from all over Germany, of all ages and with very
different life stories, yet we are connected by a shared experience. For many
of us, the virtual exchange is a real relief – especially for those who cannot
attend an in-person meeting due to health restrictions or long distances.
Because aortic dissections are so rare, there is often no suitable support
group available locally. This makes our online group all the more important,
as it allows us to connect with each other regardless of where we live. Here,
we share experiences, support each other, and grow together as a community.
Get in touch
Have you also had an aortic dissection and would like to participate in our online meetings?
Then simply contact us using the contact form; we look forward to meeting you.
As a family member, you are welcome to use the contact form if you are interested in exchanging
ideas with other family members. We will inform you as soon as a suitable group is formed.
If you have received a similar diagnosis and are looking to exchange ideas with other affected people,
you are also welcome to get in touch. In this case, we will also inform you as soon as a group is formed.
Please understand that we cannot offer medical advice on diagnoses such as aneurysms or
similar conditions. Further information can be found under "Helpful Links."
Since the meetings are held virtually, participation is only possible with your camera and microphone
switched on. We attach great importance to respectful and active participation. Furthermore,
all participants are bound to confidentiality – personal information and shared experiences must
not be shared with anyone else.
Dates
If it takes a while ;) For the past five years, we've been featured on the
page of "Die Aortis" – where people affected by the disease discovered us.
Now we've gathered the courage and the energy to get started: with our own website to gain visibility. That's the new life – some things just take time.
Every year, the Hannover Medical School hosts a patient day on the
topic of "Thoracic Aortic Surgery"
for patients and their families.
This year's Patient Day will take
place on September 27, 2025, with
the focus on human genetics and vascular surgery. Further information can be found on the MHH Hannover website.
On March 21, 2025, Oldenburg Hospital hosted its first interactive patient work-shop on aortic disease. The goal of the event was to learn more about the medical care and quality of life of patients with aortic disease. Short presentations presented important aspects of aortic disease treatment. These were followed by TED questions, which were collected digitally and anonymously. The results were presented live and discussed with
the participants.
Helpful Links
1. aorticdissectionawareness.org
The website is run by patients from Great Britain and Ireland who have experienced aortic dissection. The Aortic Dissection Awareness Organization is also supported by healthcare professionals and serves as a research organization.
https://aorticdissectionawareness.org/https://aorticdissectionawareness.org/resources/aortic-dissection-the-patient-guide
2. aorticassociation.org
An overview of specialized centers in Europe can be found on the Aortic Association website,
which lists clinics specializing in the treatment of aortic dissections.
3. aortendissektion.de
A very comprehensive website by patients for patients with practical experience
of life after an aortic dissection.
4. die-aortis.de
The Aortis is a self-help group in Hanover that meets four times a year and
always participates in the Patient Day at the MHH.
5. herzstiftung.de
The German Heart Foundation offers a wealth of information, publications, events,
and professional groups on all aspects of the heart.
https://herzstiftung.de/service-und-aktuelles/podcasts/aortendissektion
6. thinkaorta.net
Think Aorta is a global campaign focused on the problem of misdiagnosis and delay in acute aortic dissection. It was initiated and is led by the national patient advocacy organization Aortic Dissection Awareness UK & Ireland.
7. aortichope.org
Aortic Hope is a US-based initiative that supports patients and caregivers in
the recovery and treatment of aortic disease.
Experiences
After my emergency surgery, I tried to
find other people who made similar experiences to talk to. At first, it wasn't easy, as there were no local support groups in my area. Then I received an invitation to join an online group—and
I was very grateful for the opportunity to connect with others. The online meetings via Zoom are a great way for me to simply go online and participate. I've already been able to discuss many experiences and situations in the group, which has helped me a lot.
Tatjana
The time spent in both meetings in our virtual space practically flew by, and was so entertaining not only because of the moderation skills, which allowed every participant to speak, but also because
of the plenary's enthusiasm and desire
to share. After noticing that I was not
only welcomed into the existing group with interest, openness, and a friendly attitude, but also because the discussions were very objective and disciplined throughout, I immediately decided, based on the many important shared experiences of the participants,
to continue participating in the online meetings if possible.
Manfred
I also had to undergo an emergency surgery in April 2022. The life I had previously led changed completely.
I heard everywhere: "You were so lucky
to have survived." I asked myself where the other survivors were and how they and their families were doing. After some research online, I came across 'the Aortis'. The online meeting is always
a pleasant and informative exchange among like-minded people. It's good to know that there are other survivors who are in a similar situation and who have had some of the same experiences. There are always enough aspects to explore and discuss. You are simply NOT ALONE.