May you introduce your nation affiliation, ALKpositiv Deutschland, its genesis, progress and present actions?
Lately, the German affected person community, ALKpositiv Deutschland, has develop into an necessary level of contact for sufferers with ALK-positive lung most cancers in German-speaking nations.
Our story started in 2019 with a Fb group that served as a platform for these affected to trade data. From the outset, this group was an necessary place to seek out out on-line about diagnoses, therapies, unintended effects and present analysis updates, and to offer mutual help. After the founding father of the group left in 2021, Sabine Hatzfeld and Nicoline Ehrhardt have been actively managing the group till right this moment.
The affected person community ALKpositiv Deutschland was based from the group. The 2 founders of ALKpositiv Deutschland needed to make ALK-positive sufferers and their pursuits extra seen and developed knowledgeable presence. Along with the Fb group, the staff centered on collaboration and networking with related stakeholders.
The affected person community has grown steadily since then, with sufferers coming primarily from Germany, but in addition from Austria and Switzerland, and a few German-speaking members who reside overseas.
Our members are extraordinarily nicely knowledgeable about their illness, therapy choices and the opportunity of collaborating in medical trials. In Germany, too, sufferers should rise up for themselves and purchase a excessive degree of data about focused therapies, molecular diagnostics and therapeutic advances with a purpose to obtain the very best care. We and our members are dedicated to serving to and advocating for ourselves and others. We additionally supply podcasts, movies and webinars to strengthen well being literacy.
From on-line to face-to-face conferences
The rising group has allowed us to maneuver from purely digital exchanges, resembling Zoom conferences, to face-to-face conferences. These conferences present an extra alternative to trade concepts in individual and make new connections. Regional conferences have already taken place in Dresden, Hamburg and close to Stuttgart, and a daily assembly is now being arrange in Munich. Such conferences are helpful for mutual help and the trade of latest views and experiences.
Networking is a should
Along with the trade of data between members, ALKpositiv Deutschland is strongly dedicated to networking with different (lung most cancers) organizations and medical specialists. An necessary companion is the German community zielGENau, which is devoted to enhancing the care of lung most cancers sufferers who will be handled with focused therapies. Nicoline and Sabine are additionally board members of zielGENau. We use the synergies of collaborating with a bigger group to symbolize the pursuits of ALK-positive sufferers to healthcare stakeholders and coverage makers.
In our position as affected person advocates, we work carefully with oncologists and researchers to make sure that our members obtain the very best care. Particularly in the case of preliminary diagnoses and within the occasion of development, it’s essential to have entry to the most recent diagnostic procedures and the very best therapy choices. Right here, we offer direct help by connecting sufferers with lung most cancers specialists and medical organizations just like the Nationwide Community for Genomic Medication in Lung Most cancers (nngm.de).
Collaboration on the European degree
ALKpositiv Deutschland can also be a full member of Lung Most cancers Europe (LuCE). LuCE advocates for Europe-wide insurance policies to enhance the prevention, early detection and therapy of lung most cancers. By this partnership, we strengthen our voice on the European degree and assist to affect coverage choices within the curiosity of sufferers.
One other key companion is ALK Optimistic Europe, the umbrella group of European ALK-positive affected person teams. Nationwide representatives work carefully collectively to enhance the scenario for ALK-positive most cancers sufferers throughout Europe. Collectively, we work to make sure that sufferers in each nation have entry to the very best out there therapies and that analysis is pushed ahead.
www.alkpositiv-deutschland.org
Interview by: Duncan Preece