September is an important month for Myeloma Patients Europe (MPE) and our members. Each year, as part of Blood Cancer Awareness Month, we hold European Myeloma Day on 27 September. This year focused on highlighting the role of clinical trials in advancing myeloma treatments and improving patients’ quality of life.

Throughout September, our members organised different activities to raise awareness of myeloma and AL amyloidosis and advocate for patients’ and carers’ needs. Below find a summary of the activities that took place across our network.

Congratulations to all our members on these successful initiatives!

Association of Myeloma Patients in Bosnia and Herzegovina

The Association of Myeloma Patients in Bosnia and Herzegovina organised an event on 28 September which gathered patients and their families from Sarajevo, Bihać, Brčko, Zenica, Maglaj, and Tešanj, creating an atmosphere of encouragement and solidarity. During the event, attendees shared experiences and personal stories and highlighted the challenges of living with myeloma, with the healthcare system, various medications and significant issues such as osteolytic lesions, pulmonary embolisms, associated malignancies, and transplantations.

The second part of the meeting focused on future initiatives for the Association and encouraged members to actively contribute to its ongoing efforts. This gathering further confirmed the mission of the Association of Myeloma Patients in Bosnia and Herzegovina and the importance of unity in our collective efforts for a better tomorrow. Participants left feeling enriched by new friendships and strengthened support systems to face future challenges.

Awareness campaign in Slovenia

Two of our Slovenian members, the Association of Patients with Blood Diseases of Slovenia (Društvo BKB) in collaboration with the Slovenian Association of Lymphoma and Leukemia (L&L) organised a press conference on 10 September in which leading national medical experts, shared their insights on multiple myeloma and blood diseases.

Together, they also launched an important awareness campaign focused on myeloma in collaboration with the University Medical Centre (UKC) Ljubljana. This initiative aimed to raise awareness about early detection, patient care, and support for those affected by this disease. As part of the campaign, three interactive displays were set up in the main lobby of UKC Ljubljana, providing visitors with the opportunity to learn about myeloma.

The campaign also aligned with World Patient Safety Day on 17 September. A press conference was held in collaboration with the Union of Patient Organisations of Slovenia, highlighting the importance of accurate diagnosis for ensuring patient safety.

On 21 September, Društvo BKB organised an awareness event at Prešeren Square in Ljubljana, where haematologists, oncologists, and transfusion specialists interacted with the public to discuss symptoms and challenges related to blood diseases. The day began with the “Walk in red” event and a boat ride along the Ljubljanica River. Later, at Rog Center, Dr. Sanela P. Banović gave a lecture titled “Trust and optimism,” followed by the presentation of the newly translated patient guide, “Guide for Patients with Myeloma.” The day was concluded with the illumination of 21 landmarks across Slovenia in red and a photography contest titled “Shine In Red, Together We Overcome Blood Diseases.”

On European Myeloma Day, 27 September, Društvo BKB promoted the leaflet “Diagnostic Pathway for Multiple Myeloma” through their website and social media channels, providing valuable information for patients and healthcare providers.

Mercy Bridge, Russia

For Blood Cancer Awareness Month and European Myeloma Day, our Russian member, Mercy Bridge, organised a series of legal consultations on the rights of patients with myeloma and AL amyloidosis and their caregivers, which lasted throughout September with very positive feedback. Mercy Bridge also prepared and released a brochure on AL amyloidosis. The brochure’s design is based on the idea of health and positivity.

‘Miles for Myeloma’ in Ireland

During Blood Cancer Awareness Month, our Irish member, Multiple Myeloma Ireland, launched the fundraising and awareness campaign ‘Miles for Myeloma.’ Their goal was to get as many people as possible out walking, cycling and running —whether taking baby steps or big strides— to encourage patients, family, friends and communities to get together to promote exercise, while raising awareness and funds and spreading the message of living well with myeloma.

The campaign has been a tremendous success on several fronts.

• Fundraising 

While they set an original target of 50,000€ their collective efforts over September raised over 150,000€ for Multiple Myeloma Ireland. This incredible amount of money will help them continue to provide and improve research and support for patients and families affected by myeloma and AL amyloidosis.

• Promoting Awareness 

Fundraising was not the only objective of this campaign. Promoting awareness and understanding of myeloma across the country was the other equally important aim of their efforts. They were very successful in gaining a lot of national and local media coverage as many patients shared their stories on print media, radio and social media. People across the country organised group events (park walks, runs, cycling challenges), which helped spread awareness to the wider public in all parts of the country. Participants were given Multiple Myeloma Logo t-shirts to wear on their walks and at events which provided the opportunity to share information whenever people asked ‘What is multiple myeloma?

Over 1000 participants directly took part in various types of events for Miles for Myeloma. This disease is now better known among the general public and hopefully, this will lead to earlier diagnosis and quicker access to treatment. Patients and families are also much more aware of where they can get support, help and information at all stages of their pathway, much of which is through the work of Multiple Myeloma Ireland.