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Rare Disease
16 FEBRUARY 2018

February 2018 ALF News

February is a short month.  Its 28 days are filled this year with significant opportunities to raise awareness about liver diseases and the many needs of liver patients and their loved ones.

On the first of the month, the World Hepatitis Alliance launched a powerful campaign called #StigmaStops, which is a yearlong set of activities that calls to end stigma around Hepatitis.  I encourage you to participate in this campaign by contributing a photo or video or sharing experiences about stigma.  Visit to learn more.

On February 4th, many of us joined a social media thunderclap to mark World Cancer Day.  On the day set aside to think and talk, worldwide, about cancer, we helped to make liver cancer a part of the conversation.  This year alone, some 42,220 new cases (30,610 in men and 11,610 in women) will be diagnosed and about 30,200 people (20,540 men and 9,660 women) will die of these cancers.

Valentine’s Day, of course, is National Donor Day, a day to recognize our loved ones who have given the gift of donation, have received a donation, are currently waiting, or did not receive a donation in time.  I hope many of us at ALF took the time to commemorate it on social media, by sharing resources for organ donation (Donate Life, etc.) or by organizing an event around transplantation.  The more than 14,000 people currently waiting for a liver transplant need our help in raising awareness of their situation.

Finally, the last day of the month, Rare Disease Day, is intended to draw attention to rare diseases, including rare liver diseases.  Rare disease research is crucial to providing patients with the answers and solutions they need, whether it’s a treatment, cure or improved care.  We still have time to get involved by sharing a story about a patient we know who has a rare liver disease, or writing a letter to the editor of the local newspaper.  ALF has been sending national messages all month long–please do take time to share them.

A worldwide video campaign was launched on February 13th, 15 days before Rare Disease Day. Everyone will be encouraged to send the video to a friend or to share online in order to contribute to the viral success of the video campaign.  The video can be used to introduce events and to attract media attention.  Watch the video here.

Tom Nealon
American Liver Foundation

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