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.
Read MoreALK Positive, Inc has introduced a section in our newsletter to feature international (non-US) ALK patient groups/organizations. If you would like your group/organization to be featured in a future newsletter, please contact Duncan Preece at duncan.preece@alkpositive.org
In this issue, we are introducing ALK Positive Italia and have interviewed the founder, Patty Saccenti.
Read MoreCan you share with our readers the founding story of the ALK Positive Australia? What inspired the establishment of the organisation.
I, like many others, including the other founders, felt at initial diagnosis that it was difficult to find local, relevant information about ALK+ Lung Cancer and I was dubious of heading to Facebook for answers. Australia unfortunately does not have a dedicated Lung Cancer body despite Lung Cancer remaining the cancer with the highest mortality rate of all cancers in the country. Instead, we have Cancer Australia, Lung Foundation Australia, Cancer Council Australia and Rare Cancers Australia.
Read MoreCan you share with our readers the founding story of ALK Positive Denmark? What inspired the establishment of the organization? ALK Positive Denmark, founded on October 6, 2022, stands as a dedicated advocacy group for ALK-positive lung cancer patients and their families. The genesis of this initiative can be traced back to Heidi Vaarbjerg, who recognized the need for a support network for Danish patients facing ALK-positive lung cancer.
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