Hep B Blog

Tag Archives: Rare Diseases Day

Hepatitis B Foundation: Now Part of the NORD Rare Disease Community!

We’re pleased to announce that the Hepatitis B Foundation (HBF) is now a member of NORD, the National Organization for Rare Disorders, representing our program, Hepatitis Delta Connect. NORD is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. We will join 280 other patient organization members, all committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.

Although globally, hepatitis delta is estimated to affect 15-20 million people, in the U.S. it is classified as a rare disease, as it is estimated to affect less than 200,000 people. The complicated nature of the virus and limited prioritization contribute to the gap in awareness, resources, testing practices and adequate treatments for hepatitis B and delta coinfection. Joining NORD will help amplify our voice, raise awareness about hepatitis delta in people living with chronic hepatitis B, provider and pharmaceutical communities and contribute to health policy efforts.

Hepatitis Delta Connect has previously been active with NORD through participating in rare disease Twitter chats and presenting a poster at the NORD Rare Action Summit in October 2018. We’re very excited to be a part of the coalition, and to be spreading awareness about hepatitis delta!

For more information about Hepatitis Delta Connect, visit www.hepdconnect.org or email connect@hepdconnect.org.

Slaying the Fibrolamellar Beast


Fibrolamellar Chimera- Slay the Beast
The chimera mutation is common to all fibrolamellar tissue. The mythological chimera is part lion, part goat, and part serpent. Original Chimera illustration by Jessica Guercia Design by Deborah Corrigan Visual Arts | DeborahCorriganVA.com.

February 28 is Rare Disease Day.

Last year, we featured the story of Gail Trecosta, who described how her teenage son Matthew was bravely battling a rare form of liver cancer called fibrolamellar hepatocellular carcinoma (FHC).

This year we are featuring FHC again but with a renewed sense of urgency and purpose.  Continue reading "Slaying the Fibrolamellar Beast"

Fighting FHC: A Family’s Battle Against a Rare Liver Cancer

In recognition of Rare Diseases Day today, Liver Cancer Connect is honored to feature an article by guest blogger, Gail Trecosta. Gail’s son is fighting a rare form of liver cancer.

MatthewWe’ve all heard or seen heartbreaking stories of children with cancer. Ours began in October 2012. Our world turned upside down when our 13-year-old son was diagnosed with fibrolamellar hepatocellular carcinoma (FHC).

Continue reading "Fighting FHC: A Family’s Battle Against a Rare Liver Cancer"