Breaking New Ground: Immunotherapy Now Available for Recurrent Ovarian Cancer Patients
- February 24, 2026
Navigating Survivorship and Self-Advocacy After Childhood Cancer: Maria’s Journey with Mosaic Variegated Aneuploidy Syndrome 3 (MVA 3)
A New Treatment to Fight Ovarian Cancer has been Developed by UCLA Scientists
Cabaletta Bio Advances Rare Disease Treatment with Pioneering Myositis Trial and Innovative Manufacturing Breakthrough
LISTEN TO OUR PODCAST
THE LATEST FROM PATIENT WORTHY
FEATURED
UPCOMING EVENTS
SIGN UP FOR OUR NEWSLETTER
We are excited to share that Patient Worthy is headed to Washington, DC for Rare Disease Week! 🦓 💙
During Rare Disease Week, advocates from across the country gather to amplify the voices of the rare community, share powerful stories, and push for policies that improve access, research, and care. We're honored to stand alongside patients, caregivers, and other organizations making a difference.
If you'll be in DC next week, let us know in the comments! Let's keep raising awareness and driving change, together!
#RareDiseaseWeek2026 #RareDC2026 #PatientWorthy
United Leukodystrophy FoundationReminder that scholarship applications for the 2026 United Leukodystrophy Foundation (ULF) Family Conference are due by this Friday, February 27th! Applicants will be notified during the week of March 9th. To apply, please read the Scholarship Guidelines, complete and submit the application here: ulf.org/family-conference-scholarships/ #Leukodystrophy #ULFConference
" We’re honored to share Toba’s story and amplify her voice, reminding others living with rare diseases that they are never alone. My rare disease journey began in December 2010 when I was diagnosed with Bronchioalveolar Carcinoma (BAC), a rare form on non-small cell lung cancer. I underwent a left upper lobectomy on December 16 of that year. At the same time, I had been experiencing what I believed were routine gastrointestinal issues. I had GERD, stomach spasms, and severe gas.
A year later in December 2011, my yearly CT scan showed I was in fact NOT experiencing routine gastrointestinal issues. Instead, I was diagnosed with Pancreatic Neuroendocrine Tumors, also known as PNETs. PNETs are rare and often slow growing, but they require vigilance, strength, and hope. I researched surgeons at nearby hospitals and was fortunate to find an excellent surgeon who had trained in both the United Kingdom and the United States. He truly listened to my concerns, addressed every one of them, and supported me throughout the process.
On April 3, 2012, I underwent a Whipple procedure. During the surgery, 45 percent of the head of my pancreas was removed, along with my gallbladder. As I jokingly like to say, I was “replumbed.” I spent eight days in the hospital and came home with drainage tubes, but I came home. I am fortunate to be under the continuing care of a local neuroendocrinologist, where I receive highly advanced scans that were developed specifically for rare cancers like mine.
This year on April 3, I will celebrate my 14th Whippleversary. I hold this milestone with deep gratitude.
If there is one message I want others to take from my experience, it is this: always feel comfortable with your healthcare provider, especially your surgeon. You deserve to be heard, respected, and cared for. I continue to pray and sincerely hope that a cure will be found in my lifetime."
#RareDiseaseMonth #RareDisease #RareButNotAlone #WeCareAboutRare #ShareYourStripes #ShareYourStory #PatientWorthy #BronchioalveolarCarcinoma #BAC
