Introducing ALKpositiv Deutschland (Germany) An interview with Sabine Hatzfeld & Nicoline Ehrhardt
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In this issue, we are introducing ALKpositive Deutschland (Germany) through an interview with its leaders, Sabine Hatzfeld and Nicoline Ehrhardt.
Could you introduce your country association, ALKpositiv Deutschland, its genesis, growth and current activities?
In recent years, the German patient network, ALKpositiv Deutschland, has become an important point of contact for patients with ALK-positive lung cancer in German-speaking countries.
Our story began in 2019 with a Facebook group that served as a platform for those affected to exchange information. From the outset, this group was an important place to find out online about diagnoses, therapies, side effects and current research updates, and to provide mutual support. After the founder of the group left in 2021, Sabine Hatzfeld and Nicoline Ehrhardt have been actively managing the group until today.
The patient network ALKpositiv Deutschland was founded from the group. The two founders of ALKpositiv Deutschland wanted to make ALK-positive patients and their interests more visible and developed a professional presence. In addition to the Facebook group, the team focused on collaboration and networking with relevant stakeholders.
The patient network has grown steadily since then, with patients coming mainly from Germany, but also from Austria and Switzerland, and some German-speaking members who live abroad.
Our members are extremely well informed about their disease, treatment options and the possibility of participating in clinical trials. In Germany, too, patients must stand up for themselves and acquire a high level of knowledge about targeted therapies, molecular diagnostics and therapeutic advances in order to receive the best possible care. We and our members are committed to helping and advocating for ourselves and others. We also offer podcasts, videos and webinars to strengthen health literacy.
From online to face-to-face meetings
The growing community has allowed us to move from purely digital exchanges, such as Zoom meetings, to face-to-face meetings. These meetings provide an additional opportunity to exchange ideas in person and make new connections. Regional meetings have already taken place in Dresden, Hamburg and near Stuttgart, and a regular meeting is now being set up in Munich. Such meetings are valuable for mutual support and the exchange of new perspectives and experiences.
Networking is a must
In addition to the exchange of information between members, ALKpositiv Deutschland is strongly committed to networking with other (lung cancer) organizations and medical experts. An important partner is the German network zielGENau, which is dedicated to improving the care of lung cancer patients who can be treated with targeted therapies. Nicoline and Sabine are also board members of zielGENau. We use the synergies of collaborating with a larger organization to represent the interests of ALK-positive patients to healthcare stakeholders and policy makers.
In our role as patient advocates, we work closely with oncologists and researchers to ensure that our members receive the best possible care. Especially when it comes to initial diagnoses and in the event of progression, it is crucial to have access to the latest diagnostic procedures and the best treatment options. Here, we provide direct support by connecting patients with lung cancer experts and medical organizations like the National Network for Genomic Medicine in Lung Cancer (nngm.de).
Collaboration at the European level
ALKpositiv Deutschland is also a full member of Lung Cancer Europe (LuCE). LuCE advocates for Europe-wide policies to improve the prevention, early detection and treatment of lung cancer. Through this partnership, we strengthen our voice at the European level and help to influence policy decisions in the interest of patients.
Another key partner is ALK Positive Europe, the umbrella organization of European ALK-positive patient groups. National representatives work closely together to improve the situation for ALK-positive cancer patients across Europe. Together, we work to ensure that patients in every country have access to the best available treatments and that research is driven forward.
www.alkpositiv-deutschland.org
Interview by: Duncan Preece