Yesterday, on Rare Cancer Day, the Bloom Syndrome Association (BSA) reflected on the challenges faced by those living with rare cancers – and celebrated an extraordinary milestone: a $500,000 gift to support our ongoing work to understand and address cancer in Bloom syndrome (BSyn).
Bloom syndrome is not only an ultra-rare genetic disorder – it is also a rare cancer condition. People with BSyn face an extremely high lifetime risk of developing cancer, often at early ages and in multiple organ systems. Yet, because of the rarity of the condition, the cancer spectrum and optimal treatment approaches remain poorly defined.
In response, the BSA has joined the NORD Rare Cancer Coalition, amplifying the voice of the BSyn community within the broader rare cancer movement. We’ve also launched the Hesch Hope Project, a multi-pronged initiative beginning with the creation of a Virtual Tumor Board to guide care for individuals with active cancer and to collect data on both active and historical cases, laying the foundation for better, more informed care.
This extraordinary gift, made in honor of Rare Cancer Day, is dedicated to all members of our community currently fighting cancer, and made in memory of a beloved community member who was deeply committed to advancing cancer research in BSyn and whose legacy continues to inspire this mission. Their vision lives on in every effort we make to understand, prevent, and treat cancer in Bloom syndrome.
Together, we move forward – with hope, determination, and the strength of community – to build a future where no one with Bloom syndrome faces cancer alone.