Rare Disease Day is held on the last day of February every year to raise awareness of rare diseases and the theme for this year is research. Research is key as it brings hope to the millions of people living with pseudomyxoma peritonei (PMP) and other rare diseases across the world and to their families.

Without research, as PMP patients and caregivers, we wouldn’t even know the most fundamental questions to ask our doctors. The doctors wouldn’t know what to tell us, they wouldn’t know what was happening in our bodies. How could we live one day to the next without these basic answers?

Research gives us a name to hold on to and increases understanding of the disease. Research leads to treatments such as cytoreductive surgery and HIPEC. Research leads to chances. Research leads to hope.

When we don’t have hope, what do we have? Sean Hepburn Ferrer shares with us the lack of hope he and his family experienced following his mother’s, Audrey Hepburn, actress, icon and humanitarian, own diagnosis with pseudomyxoma peritonei (PMP). The advances today with the understanding we can gain and the treatment options available are a real reason to rejoice and to be happy.

 

 

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