In this issue, we are introducing ALK Positive France (ALK France Cancer Poumon Inc.) through an interview with its leaders, Valérie Montagny and Sandrine Alliaume.

Can you share with our readers the founding story of ALK Positive France ? What inspired the establishment of the organization?

ALK Positive France, founded in April 2021, stands as a dedicated advocacy group for ALK-positive and ROS1 lung cancer patients and their families.

The creation of the French ALK association started from a meeting between French ALK Positive patients and caregivers in the international group of the US-based ALK Positive entity. French patients discussed that it was time to create a group in France to no longer leave patients alone and isolated.

Some ALK patients are the only ones in their hospital and some doctors are not particularly familiar with these rare forms of lung cancer. There was an urgent need to allow patients to share their disease, their questions about the future, the side effects of their treatments with other patients. All oncologists do not have the same knowledge about ALK or ROS1 throughout France, depending largely on whether they practice in an academic medical center.

We realized the urgency and the importance of advocating for ALK Lung Cancer patients, starting from the need for an early diagnosis.

We immediately created a French Facebook group in January 2021 and Valérie Montagny launched the creation of an association where she is the president and I am the secretary. Valérie has been an ALK patient since 2018, and my husband, Frédéric Alliaume, has been an ALK patient since 2014.

The creation of this association allows us to receive donations and be recognized by organizations in France. A strong mobilization took place to launch and make the association known. A logo, a website and a patient-oriented leaflet have been produced. The leaflets were sent to all the hospitals in France.

A few months after its creation, ROS1 patients contacted us to ask to join our group. As the treatments and side effects were similar to those of ALK+ patients, we welcomed them into the group.

Patients and caregivers have made it possible to make our association well known, which has quickly become a reference in France among non-small cell lung cancers with oncogene-addicted mutations.

We managed to create a scientific committee with oncologists, including 15 ALK experts from France: Pr Mazières from Toulouse (the president of our Scientific Committee), Pr Besse from Gustave Roussy, Pr Cortot from Lille, Pr Cadranel from Tenon, Pr Duruisseaux, Pr Couraud and Dr Perol from Lyon, Dr Moro-Sibilot from Grenoble, and we have meetings with them 3 times a year.

In 4 years, the association has become important and recognized among physicians and oncologists, and we are invited to many conferences concerning thoracic oncology in France. We have created partnerships with the two major groups of oncologists in France, the IFCT (Intergroupe Francophone de Cancérologie Thoracique) and the GFPC (Groupe Français de Pneumo-Cancérologie).

We are present on all social networks:

2-Elaborate on the core values that drive ALK Positive France and how do these shape the organization.

Our core values at ALK Positive France Inc. are based on patient education and support, patient and caregiver well-being, advocacy and awareness, sharing evidence-based information and trials, referring to experts for second opinion, and research and innovation.

Patient Education and Support :

We want to educate ALKies and the broader community, so that they are empowered to find science-based information as well as links to support groups and other helpful resources. Our goal is that our members are well informed about their disease, treatment options and clinical trials.

Patient and caregiver well-being

Our focus is connecting people together, organizing weekly supportive care meetups and events for patients and caregivers. Vacations and staying for a week at different places in France with other ALK-ROS1 patients are highly sought-after events.

Advocacy and Awareness:

We want to be the first port of call for ALKies based in France to find information and links to others. Oncologists give out our information flyer to their ALK and ROS1 patients. ALKies know they are not alone, and we are there to help them.

We organize meetings regularly with the national health care administration in France regarding authorization and reimbursement of medication.

Sharing evidence-based information and trials

We share updates on new research in science and pharmacology, we attend conferences and learn about trials and events; we refer patients who need a second opinion to the appropriate ALK specialist, and supply patients who experience progression with the most updated data. We organise webinars with the oncologists of our medical committee.

Research and Innovation.

We do fundraising and, from time to time give some financial assistance to researchers. We are integrated into multiple oncologists’ projects throughout the country.

3-Highlight key milestones since its inception - how has it evolved over time?

We are a very active association; each year we organize many events for patients and caregivers.

For example, in 2024 :

4-Looking ahead, what is the vision for ALK Positive France in the coming years? Are there any strategic goals or projects that the organization is particularly excited about?

Inspired by the ALK Positive Summits, we will organize for the first time in France on November 9th-10th in Paris, an ALK-ROS1 Summit « INSPIRE … à pleins poumons » to have face-to-face meetings with patients and caregivers and meet ALK-ROS1 professional experts.

It will be a great opportunity for French patients to meet each other and to meet experts.

5-Lastly, what message would you like to convey to our readers regarding the significance of ALK Positive France’s work and the importance of supporting its mission?

We also participate in scientific projects around lung cancer with oncogene mutations.

Our active collaborations with leading medical professionals, including expert oncologists and researchers, have positioned ALK Positive France as a key player in France.

A FEW EXAMPLES

- COALA (Cure Oncongene-Addicted Lung Adenocarcinomas), an ambitious national project with 15 centers in France seeking a cure or, minimally, transforming it into a manageable chronic disease. This project is coordinated by Pr Mazieres, from Toulouse.

- DRACONIS: Describing the cognitive disorders and neuropsychiatric symptoms that may follow the treatment of lung cancers with ALK/ROS1 fusion and their effects on the quality of life of patients. Implementing a collaborative approach between researchers, clinicians and patients in order to build research as close as possible to the real needs in connection with the ALK/ROS1 France Cancer Lung association. This project is coordinated by Pr Duruisseaux, from Lyon.

- PERLE: Lung cancer screening and prevention. . This project is coordinated by Pr Couraud, from Lyon.

-Even if there is still a lot to do, we've successfully raised awareness about ALK-positive lung cancer. We have achieved notable milestones in advocacy, research, patient education, collaboration with ALK experts and international collaboration, showcasing our dynamic commitment to continuous improvement to the well-being of ALK-positive lung cancer patients.

We also collaborate at the European level.

We are 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. We are also a member of ALK Positive Europe. Together, we work to ensure that patients in every country have access to the best available treatments and that research is driven forward.

Interview by: Duncan Preece

If you are the founder or leader of an ALK patient group or organization based outside the US, we would love to feature you on our newsletter. If you would like your organization to be featured in an upcoming newsletter, please contact Duncan Preece at Duncan.preece@alkpositive.org

Introducing ALK Positive France (ALK France Cancer Poumon Inc.)