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Rare Tumor Realities

Stories and Insights from the Rare Tumor Community

While "rare tumors" are uncommon by definition, the rare disease community as a whole is actually quite large. Thousands of rare diseases have been identified to date, impacting millions of individuals worldwide. Despite this shared experience, living with a rare disease can often feel isolating. In addition to the challenges unique to their specific condition, people living with rare diseases and their loved ones frequently encounter limited awareness, delayed diagnosis, and the desire to feel seen and understood.1 And this is not different within the rare tumors space.

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people are impacted by
a rare disease around the world1

For people living with rare tumors, receiving an accurate diagnosis can take time. The rarity and complexity of these conditions, coupled with symptoms that may resemble other conditions, can make the path to diagnosis challenging. In some cases, even highly experienced doctors may have never encountered certain rare tumors in practice because they are so uncommon.2,3,4

Rare Tumor Realities Intent to Bring Greater Visibility Rare Tumor Realities Intent to Bring Greater Visibility

Rare Tumor Realities Intent to Bring Greater Visibility

to the lived experiences of people impacted by rare tumors and sarcomas, helping to foster understanding, connection and conversations around improving care.

Explore authentic patient stories and expert perspectives that illuminate the realities of living with rare tumors and help those impacted feel seen, heard and less alone.

Hear from People Living with Rare Tumors

Rare tumors affect the body, mind and everyday life.5 Learn more about the challenges, hopes and experiences of people living with rare tumors.
  • Aylin headshot
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    Aylin
    “What really helped me on my journey was being able to connect with other people who have the same diagnosis.”  – Aylin, living with desmoid tumor
  • Elisa headshot
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    Elisa
    “Today, for me, the desmoid tumor is part of my body, part of my life.” – Elisa, living with desmoid tumor
  • Charly headshot
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    Charly
    “When I'm on the boat, the disease is just a bottle, and I toss it away. I get rid of the disease, I throw it out like throwing a bottle into the sea…I forget that I have neurofibromatosis.” – Charly, living with NF1-PN
  • Arianna headshot
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    Arianna
    “The advice I would give to people is…to never give up, to feel special, not different.” – Arianna, living with NF1-PN

Learn from Experts in the Rare Tumor Space

Rare tumor care is informed not only by science, but by patient and caregiver experiences. Through Rare Tumor Realities, experts across patient advocacy and medical affairs discuss the realities people living with rare tumors want others to understand and the role the broader care community can play in advancing awareness and support.

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Rare Tumor Realities: Understanding Patient Realities

Listen to Louise Young, PhD, and Hazel Moran discuss the challenges seen across the rare tumor community and reinforce why elevating lived experiences is essential to driving broader understanding and progress in care.


Louise Young, PhD, Global Medical Lead, Rare Tumors at Merck KGaA, Darmstadt, Germany Healthcare

Hazel Moran, Vice President and Head of Global Patient Insights and Advocacy at Merck KGaA, Darmstadt, Germany Healthcare

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Rare Tumor Realities: How Advocacy Plays a Role in Helping the TGCT Community

Learn from Sydney Stern and Hazel Moran about the daily challenges of living with TGCT, available support resources, and the important role advocacy groups play in helping patients navigate their journey.

Sydney Stern, MD, Senior Director of TGCT Support and a leader in the TGCT community

Hazel Moran, Vice President and Head of Global Patient Insights and Advocacy at Merck KGaA, Darmstadt, Germany Healthcare

Dr. Stern participated in this discussion at the invitation of EMD Serono. No financial com

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Rare Tumor Realities: Navigating the Daily Realities of Living with NF1-PN

Krista Comfort, patient living with NF1-PN, and Hazel Moran discuss living with NF1-PN, the challenges of everyday life, the importance of disease awareness, and the value of connecting with others within the community.

Krista Comfort, Patient with NF1-PN

Hazel Moran, Vice President and Head of Global Patient Insights and Advocacy at Merck KGaA, Darmstadt, Germany Healthcare

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Rare Tumors Rare Tumors

Our Commitment to the Rare Tumor Community

At Merck KGaA, Darmstadt, Germany, we focus on advancing specialty innovation where unmet needs are high, helping to improve and prolong lives.

Our global Rare Tumors therapeutic area builds on a strong foundation of both internal expertise and external innovation, and brings urgency, scientific rigor and patient-centricity to provide more meaningful outcomes for those living with these conditions.

References

  1. The Power of Being Counted. Global Genes / RARE-X. 2022. https://globalgenes.org/wp-content/uploads/RARE-X_be-counted-052722-WEB.pdf.
  2. Skubitz K. Biology and treatment of aggressive fibromatosis or desmoid tumor. Mayo Clin Proc. 2017;92(6):947-964. doi:10.1016/j.mayocp.2017.02.012.
  3. Ehrenstein V, et al. Tenosynovial giant cell tumor: incidence, prevalence, patient characteristics, and recurrence. A registry-based cohort study in Denmark. J Rheumatol. 2017;44(10):1476-1483. doi:10.3899/jrheum.160816.
  4. Stewart D, et al. Care of adults with neurofibromatosis type 1: a clinical practice resource of the American College of Medical Genetics and Genomics (ACMG). Genet Med. 2018;20(7):6771–682. doi:10.1038/gim.2018.28.
  5. Fournier H, et al. Psychosocial implications of rare genetic skin diseases affecting appearance on daily life experiences, emotional state, self‑perception and quality of life in adults: a systematic review. Orphanet J Rare Dis. 2023 Feb 23;18(1):39. doi:10.1186/s13023-023-02629-1.

 

GL-NONRDSARC-00011 September 2026