Karen Van Rassel Leadership Award

Lymphoma Coalition is pleased to present the 2024 Karen Van Rassel Leadership Award to Blood Cancer Foundation of Tanzania-BCFT 

Pictured (L-R): Dr. Hamisa Iddy of BCFT with Lorna Warwick, LC CEO

Lymphoma Coalition extends heartfelt congratulations to the Blood Cancer Foundation of Tanzania (BCFT), the recipient of the 2024 Karen Van Rassel Leadership Award, honoured during this year’s Global Summit.

BCFT has demonstrated outstanding leadership in raising awareness about lymphoma and other blood cancers across Tanzania, despite them only being in their 3^rd year of operation. Through their community events and educational initiatives, BCFT reaches a broad audience, including patients, caregivers, and healthcare providers, to improve understanding and early diagnosis of blood cancers. Their commitment to accessible care and support for those affected is evident in their advocacy efforts.

Notable initiatives include:

• Petitioning the government to add critical blood cancer tests, such as Polymerase Chain Reaction (PCR), to the national health insurance scheme to make these high-cost tests more accessible.
• Requesting the establishment of additional clinical centres across regions to expand access to specialised blood cancer services.
• Implementing a priority system for blood cancer patients to expedite their access to doctors, tests, and results, reducing wait times and easing travel burdens for those coming from distant locations.
• Providing essential blood cancer medications free of charge through government medical stores.
• Developing and distributing educational resources—brochures, pamphlets, and other materials—to patients and caregivers, offering guidance on symptoms, treatment, and managing the disease.
• Conducting outreach programmes with various community groups to spread awareness and provide educational support.
• Collaborating with the Lymphoma Coalition to mark World Lymphoma Awareness Day, hosting a conference with patients, caregivers, healthcare professionals, and media, where experts provided educational insights.

BCFT’s dedication to blood cancer awareness and patient care in Tanzania embodies the spirit of the Karen Van Rassel Leadership Award. This recognition highlights the impact of BCFT’s work and its commitment to creating lasting change within the healthcare landscape.

For more on BCFT’s impactful work, visit their Facebook page. Coalition can not express enough how grateful we are to AIL-FIL for this effort.

Lymphoma Coalition is pleased to present the 2023 Karen Van Rassel Leadership Award to Associazione Italiana contro Leucemie, Linfomi e Mieloma (AIL).

AIL has a long history – over 50 years – of supporting patients with blood cancers and supporting research into haematological cancers. Specific to lymphoma, in 2016 the Lymphoma Patients Group (AIL-FIL) was formed, a joint initiative of AIL and Fondazione Italiana Linfomi (FIL), which coordinates and carries out scientific research activities for the treatment of lymphomas and lymphoproliferative disorders in about 150 centres across Italy.

Services patients and their loved ones can access include:

• Online and phone counselling services, where patients can talk about their welfare or any issues they may have accessing care.
• Phone conversations with haematologists if they need more insights on their disease and/or psychologists if they need more help with the emotional aspects of their diagnosis.
• Online and in-person educational events to help patients better understand lymphoma, including CLL, and other important topics around life with lymphoma.
• Written information on a range of topics from general disease information to the latest information on vaccinations.
• AIL also provides practical assistance to families as they go through treatment, helping with housing, travel, home care, etc. as needed.

As well, AIL-FIL are strong advocates for system and societal changes to ensure patients receive optimal care.

Where AIL-FIL went above and beyond is their response to the ongoing Ukrainian crisis. In 2022, when Lymphoma Coalition started its work to ensure patients from Ukraine with any type of blood cancer could continue to receive care in the midst of the crisis, we reached out to a number of groups for help. AIL-FIL stepped up right away. Not only did FIL (the research group) immediately start to figure out what clinics in Italy had the capacity to take in patients, AIL started to plan how they could help with practical support.  Thanks to the actions of the local AIL branches, social support was provided, including help with bureaucratic and legal procedures to attain refugee status and get healthcare coverage; interpreters and translators were made available; free accommodation for patients and caregivers in AIL houses or other affiliated facilities was arranged; and financial aid for daily expenses was provided (medical care was paid for by the national health program). As patients and their loved ones arrived in Italy, they would have people ready to welcome them and help with any support they needed to make the transition as easy as possible, including practical support on how to get to the treatment centre and navigate the hospital. In addition, AIL was also active in providing help to patients who remained in Ukraine. In association with Ukrainian citizens living in Italy, repeated deliveries of clothing, medicines, medical devices, and foods have been sent to Ukraine.

AIL has always provided excellent support to patients and their loved ones in Italy and continues to do so to this day. How they stepped up to help those from Ukraine went far beyond expectations and showed their commitment to the global community. Lymphoma Coalition can not express enough how grateful we are to AIL-FIL for this effort.

Lymphoma Coalition is pleased to present the 2022 Karen Van Rassel Leadership Award to Lymfoma a Leukémia Slovensko (LyL) in Slovakia.

LyL is a volunteer-driven organisation, who has managed to achieve much with limited resources. In 2021, the organisation’s 15^th anniversary, the Board rethought what the organisation should be and how it should operate to find something that worked well for them – a team-based consensus model. They expanded their reach, recruited more volunteers, and rebranded. This has brought them renewed energy and strength, which has extended their reach.

In particular, it is impressive how quickly they responded earlier this year to the crisis in Ukraine.  LyL was the first organisation in Slovakia to establish a helpline for Ukrainian cancer patients (they helped patients with any type of cancer, not only blood cancers), with the helpline and website active within 48 hours of the conflict starting. They recruited Ukrainian speaking doctors and other volunteers, able to translate information including medical records, accompany patients to hospitals, and interpret as needed. Advice was provided on possible treatment options in Slovakia and neighbouring countries, navigating patients through the healthcare system, finding treatments, and advocating for individual patient needs. In the first half of 2022 they helped more than 155 Ukrainian cancer patients and their families.

On top of this, LLS also accomplished the following:

• With other stakeholders, LyL contributed to a new law on drug reimbursement. While this project took many months with multiple debates, and a public protest to ensure it was passed as written and not amended, the law was finally signed in June and is expected to result in 20 new treatments being reimbursed. This is a huge achievement and demonstrates the power of partnerships.
• Miroslava Fovenyes, from LyL, is the only patient representative to sit as a full member in the newly created ethics committee for the clinical trials of human drugs at the Ministry of Health of the Slovak Republic, ensuring the patient perspective is part of the process.
• LyL continued their work educating and supporting patients. This included creating a special Covid-19 section on their website and videos to ensure patients receive good information in a timely manner, including credible information on vaccination. A webinar series focused on mental health, how cancer impacts relationships, and self-management. Face-to-face meetings were held in 4 cities, along with a large 4-day conference, to allow patients and their loved ones to learn and share together. And 650 matches were made through their buddy program, and another 65 medical consultations with their volunteer doctor..

Congratulations to Lymfoma a Leukémia Slovensko! To find out more about their efforts, please visit their website or their Facebook page.

Lymphoma Coalition was pleased to present the 2021 Karen Van Rassel Leadership Award to Lymphoma Action in the UK.

Lymphoma Action, one of the founding Member organisations of Lymphoma Coalition, is the UK’s only charity dedicated to lymphoma. Their overarching mission is to “make sure no one faces their lymphoma alone”. Over their 35 years, they have provided vital support, information and education for people affected by lymphoma and the healthcare professionals that support them.

While this ongoing work is important and valuable, Lymphoma Action’s response to the Covid-19 pandemic and the specific challenges it brought to the lymphoma community is what led to them being the 2021 recipient of the Karen Van Rassel Leadership Award. Lymphoma Action admirably responded quickly and effectively to the global crisis, expanding their efforts, and modifying their programmes to address the issues the pandemic caused for those affected by lymphoma.

This included:

• Ensuring people with lymphoma and their loved ones had access to the most recent information on COVID-19 and its impact on their care. The Lymphoma Action team connected frequently with their medical advisors to provide clarity and consensus of information in a rapidly changing environment. Various channels were utilised to communicate information on COVID-19, its impact on cancer care, special precautions for people with lymphoma, as well as both local and national pandemic-related mandates.
• Working collaboratively with charity partners to influence policy and advocate on behalf of people with lymphoma who were classified as Clinically Extremely Vulnerable to COVID-19 (CEV). This included calling on government officials, appealing directly to the public to help protect CEV people and launching a Distance Aware Campaign to support people who had concerns around staying safe when outside their homes during the pandemic.
• Modifying their services to support healthcare professionals whose work was deeply impacted by the pandemic, including offering events on self-care and effective ways of managing patients virtually.
• Focusing on how they can help alleviate health inequalities, an issue exacerbated by the pandemic. Despite the success of their efforts to date, Lymphoma Action is concerned for the patients they currently don’t reach. They are actively working to improve their services to support those who may find connecting with Lymphoma Action more of a challenge.
• Taking care of their staff team by ensuring practices were in place to protect them from COVID-19, but also adding resources and supports to help them with their wellbeing through these difficult circumstances.

As a result of their well-planned, strategic efforts, Lymphoma Action increased their reach and were able to support more people from greater distances. They are also well situated to move forward from the pandemic, willing to adapt quickly to change and learn from their experiences.

Ropinder Gill, Chief Executive for Lymphoma Action, said, “We’re simply delighted to get this award, especially as I know there are so many deserving organisations in Lymphoma Coalition. The pandemic has been tough for people, for those affected by lymphoma and for our staff. I am so proud of how the team here have worked to provide the best information and support that they could, driven by a real focus on the job we’re here to do for people affected by lymphoma. This is a lovely recognition for all that work – thank you.“

To learn more about Lymphoma Action’s work, visit their website, check out their COVID-19 resources and review their information and support services.

Lymphoma Coalition is pleased to present the 2020 Karen Van Rassel Leadership Award to the Lymphoma Patient Association/Udruźenje Obolelih Od Limfoma (LIPA) in Serbia.

Innovation, integrity, and responsibility are in the heart of LIPA’s work and their collaborative mindset focuses on contributing to better care of patients and their family members. LIPA’s ambition is to be the most collaborative and trusted patient organization in Serbia and broader, with a strategy built sourcing for shared value, innovating responsibly, and acting for patients. LIPA had an extraordinary year and was able to drive real change for people affected by lymphoma in Serbia, despite the impact of the COVID-19 pandemic. This was all done by a small team of very dedicated volunteers.

LIPA has long had a robust offering of educational and support sessions in place for those affected by lymphomas, including CLL. This year they added:

• A patient helper programme where well-trained volunteers are placed in larger hospitals to help bridge the interaction between patients and healthcare providers. These volunteers ensure patients get the information and support they need while being respectful of doctor’s time. Before the pandemic forced the program to halt, they had helped over 100 patients.
• A bi-monthly workshops for older patients, which unfortunately had to stop due to COVID-19. Recognising this group is vulnerable and may be more impacted by isolation, a weekly online session has replaced these face-to-face meetings for the time being.

Digital tools became more important for us all when COVID-19 changed how healthcare is delivered.

• This year LIPA launched the Linfom App that provides credible resources for educational purposes and allows patients to track their symptoms and overall experience in a format that can be shared with their care team. There are already over 1,000 people using the app.
• With the advent of the pandemic, patients were concerned how to get professional help when needed so LIPA, in cooperation with IT experts, created a specially designed platform for online consultation for people with lymphoma and CLL. The platform offers patients access to lymphoma/CLL experts (7 doctors), a nutritionist and a psychologist through online video consultation. Approximately 50 patients each month are using this service. 
• They also do an annual digital campaign through social media that shares tools and resources to help patients cope with everyday life. 
• They have developed a platform on their website for the new Share for the Future project, which provides information about AI in medicine, Big Data, personalized medicine and the importance of sharing data. 

While Serbia guarantees universal healthcare coverage through compulsory health insurance, in reality, there are numerous obstacles in providing healthcare services. In conjunction with the Serbian Hematology Association, LIPA met with government officials and were able to have a special access scheme for novel therapies introduced into the country, allowing more patients access to much needed newer treatments. This is a remarkable end result and an excellent example of how different members of the lymphoma community working together can bring about much needed change.

This is only a sampling of LIPA’s efforts. It clearly shows that a small group of committed people can have a large impact, even in challenging circumstances.

To learn more about LIPA’s work, visit their website, educational resources and app.

Lymphoma Coalition proudly recognised Linfomas Argentina as the recipient of the 2019 Karen Van Rassel Leadership Award, presented during the Global Summit in Barcelona.

Linfomas Argentina demonstrated remarkable leadership in building a strong, patient-centred organisation from the ground up. What began as a small initiative grew into a comprehensive support system offering education, guidance and services to people living with lymphoma across the country. Their work was powered by a passionate team of volunteers and staff, and strengthened through meaningful collaboration with healthcare professionals.

Beyond direct patient support, Linfomas Argentina played an active role in national, regional and global efforts to improve healthcare systems and access to quality care. They successfully built on global initiatives—such as World Lymphoma Awareness Day—by adding a powerful local perspective to raise awareness and increase understanding of lymphoma. Their commitment to continuous learning ensured they remained innovative and responsive in an evolving lymphoma landscape.

At the heart of the organisation was Dr. Haydee Gonzalez, co-founder of Linfomas Argentina, who transformed her own experience with lymphoma into a mission to create change. Her leadership—and the dedication of the entire team—helped improve the lives of countless patients and families.

Linfomas Argentina truly embodied the spirit of the Karen Van Rassel Leadership Award through compassion, advocacy and sustained impact.