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United Against Rare Diseases

Feb 10, 2015 | News, Research & Innovation

This reflection was written by TCF volunteer Paul Oramasionwu.

On October 29, 2025, I spent the day at TargetCancer Foundation’s Think Tank on Advancing Precision Medicine in Rare Cancers at The State Room in Boston. I was there as a volunteer, managing check-in and keeping speakers on schedule (more nerve-wracking than it sounds), and I stayed through the reception to talk with clinicians, genetic counselors, researchers, and fellow supporters.

A bit of background: I’ve been volunteering with TargetCancer Foundation since 2019, mostly behind the scenes doing IT work. I build apps and scripts for data management and automation, and I troubleshoot tech issues as events come together. I do it because rare cancers are devastating and often overlooked, and it’s meaningful to use my skills in support of this work.

Did you know that in the US, a disease is considered rare if it affects under 200,000 people? “Rare” doesn’t mean much, however,  if you or someone you love is diagnosed a rare disease- you just want to know what to do, which doctor to see, and how to find the best treatment.

In the world of treatment and research however, rare unfortunately means a lot. Every day, people diagnosed with rare diseases have to face the additional challenge of learning that there is no treatment for their disease, and little research available- simply because their disease is rare.

While TargetCancer Foundation focuses on rare cancers, this experience is true of most rare diseases. That’s why we are proud to be collaborating with other foundations and industry partners to be a Supporting Foundation of 2015 Rare Disease Day. Events will be happening all over the country,  and we will be participating in the February 23 event at the State House in Boston.

Strength in numbers is critical at events like these, and we hope you will join us as we bring awareness to rare cancers and the need for more funding for research and better treatments. You can learn more and sign up for this event by following the link below.

LEARN MORE.

Alone we are rare. Together we are strong.