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Lyfebulb Launches RareCancerLyfe, A Digital Platform to Support the Rare Cancer Community

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Press release content from PR Newswire. The AP news staff was not involved in its creation.
January 10, 2023 GMT

NEW YORK, Jan. 10, 2023 /PRNewswire/ -- Lyfebulb, a digital healthcare platform that bridges patients with industry to support user-driven innovation, education and connectivity, announced today the launch of RareCancerLyfe ( ). RareCancerLyfe is an online community for patients and support partners to connect on a personal level under the shared topic of disease, to learn from and inspire one another. Lyfebulb’s mission in building the platform is to help the rare cancer community help feel less alone through sharing experiences, accessing curated resources, and providing both 1:1 and community support.

“There is an incredibly significant unmet need in the rare cancer community in terms of patient support and education,” said Karin Hehenberger, MD, PhD, CEO and co-founder of Lyfebulb. “Most types of cancer are considered rare, and although new treatments are being developed, many people continue to struggle to find the right diagnosis and importantly others with similar diagnoses. RareCancerLyfe does not provide any medical advice; it instead provides curated access to resources, peer support, and is a place where individuals can find that one person to connect with to not feel so alone.”

With the support of Helsinn, global biopharma leader in oncology and rare diseases, RareCancerLyfe was developed with insights and contributions from patients, care partners, and industry leaders alike. It currently offers four features:

  • Find-A-Friend for one-on-one matching with peers;
  • Discussion Forum for posing questions and receiving answers from the community at large;
  • Journal for logging metrics and daily thoughts; and
  • Resources for educational materials, inspirational stories, and external links to organizations that share the same mission.

“Through my own cancer journey and related advocacy, I have met so many individuals who did not have a community because their cancer was so rare,” said AnnMarie Giannino, Cancer Survivor and Director of Community at Lyfebulb. “It is exciting to be part of the team launching RareCancerLyfe and finally offering a platform that those living with a rare cancer can call home!”

There are a total of 17 rare cancers currently featured on the site, and that figure is growing. In the future, Lyfebulb plans to expand the educational offerings to feature webinars with key opinion leaders, ‘ask me anything’ sessions with patient experts, blog-style articles, and education about and access to clinical trials. For more information on RareCancerLyfe or to register as a member, please visit

About Rare Cancer

Rare cancers are defined by the United States National Cancer Institute (NCI) as those with an incidence of fewer than 15 per 100,000 people per year. Rare cancers account for approximately one quarter of all cancers diagnosed each year. We have also included more common cancers with rare mutation types in our community.

About Lyfebulb

Lyfebulb empowers people living with chronic illnesses to thrive through education, innovation and connectivity. The company bridges the gap between patient communities and the healthcare industry by working directly with patients and care partners to generate insights and build new solutions to reduce the burden of living with chronic disease. The company operates three digital patient communities, TransplantLyfe, IBDLyfe, and RareCancerLyfe. For more information, visit,,,, Instagram, LinkedIn, Twitter, Facebook, and Karin Hehenberger’s personal LinkedIn.

Lyfebulb Contact:

Karin Hehenberger, MD, PhD
CEO & Founder, Lyfebulb
Phone: + 1 917-575-0210

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SOURCE Lyfebulb