Could you kindly tell us something about yourself?
I have been president of the German PHeV since 2012. My input and the one of all others is voluntary! I am not a patient and I contribute to our organization in a “strategical” way. We have regional groups in nearly every region of Germany. Our group is structured with a BOARD (6 members) and we have yearly meetings for our members (currently 1400). We train the regional leaders twice a year. With the exception of the COVID-19 period, we organize 3-5 patient meetings in the country side. Our major focus is on being close to the patients and supporting them.
Why is it important to have a patient association? With your patient association how did you touch the lives of patients and caregivers?
As mentioned above we support patients in their daily problems. We communicate via internet, social media and our journal (2 per year). Normally we offer an annual members’ meeting, which features presentations by physicians and other HCPS, workshops and talks between patients.
How are you supported? Do your members pay a membership fee? Are you also supported by the industry?
We ask a small membership fee (30€ per year) and we are supported by industrial partners.
Did the Association forego any difficulties whilst it was being set up?.
No! Only getting more members is a problem.
In Germany do you come up with difficulties in finding sponsors domestically or internationally? Do you have a special strategy in convincing companies or people to help you?
Yes, this is not easy. We try to go public via radio and internet. Especially the Pulmonary Hypertension Awareness Day, May 5, is a good occasion for raising awareness.
What kind of campaigns do you organize to raise awareness? We do know that your Association is highly active and that you take part in organizing very effective events. Can you please name a few?
WPHD, regional and national meetings.
Do you organize activities with other associations both on national and international basis for example for certain days?
WPHD with France and Switzerland.
Do the events organized by the Association get coverage on the national media?
They annual conference does.
Are your members patients or rather relatives and caregivers? Or are they volunteers? Are the senior members who are active paid in any way or are they volunteers?
90% are patients and caregivers. Everything is on voluntary basis.
The work carried by the Association is centralized or decentralized? According to you which is better?
From the legal point we are centralized. From the execution part we are decentralized as being close to the patient matters. Both work well together.
How are your relations with other associations on domestic and international basis?
We are connected with most national groups and also with EURORDIS, the European Rare Disease Organisation.
Would you have small groups of patients who chat about their problems? Are there doctors or psychologists who are members of the Association?
At our meetings this is part of the agenda. We do not have doctors or psychologists as members.
Can you supply psychological or financial support for the patients?
We try to supply help for the patients.
With other associations on domestic grounds can you participate in scientific meetings or meetings with other pharmaceutical companies?
Yes, this is our running practise. We use the offers.
What are your targets for 2022?
We will be producing a movie for our 25 th anniversary.
Dear Mr. Kulla we thank you very much indeed for your time and effort. We look forward to seeing your film.
Interview originally published in “Nefes”, the Turkish pulmonary hypertension association magazine
Publication on PH-KSP authorised by the Turkish pulmonary hypertension association PAHSSc
Cover photo: Hans-Dieter Kulla, President of PH ev