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Archives for: June 30th, 2022

NORD’s Living Rare Forum and Rare Impact Awards Highlight Powerful Patient Stories and Community Rock Stars

Written by Rohan Narayanan on June 30, 2022

NORD’s patient centric conference showcased inspiring individuals, expert resources and presentations, and a festive celebration at the Rock and Roll Hall of Fame

Cleveland, OH, June 29, 2022 – This week, the National Organization for Rare Disorders (NORD®) hosted the Living Rare, Living Stronger NORD Patient and Family Forum, NORD’s annual… Read More

Voices of Rare Cancer: Lisa’s Story

Written by Valaree DonFrancesco on October 1, 2019

Life was busy in 2010 with work, volunteering and engaging with our sons’ sports schedules. Being tired was just part of our eventful lifestyle. Consequently, when we received my diagnosis of stage IV intrahepatic cholangiocarcinoma at the age of 46, we were shocked. We believed we were investigating… Read More