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June 10, 2022 News by Mary Chapman

NORD’s ‘Living Rare, Living Stronger’ Patient, Family Forum Set for June 26

The National Organization for Rare Disorders’ (NORD) “Living Rare, Living Stronger Patient and Family Forum” is back in person on June 26 for a day of learning and networking in Cleveland, Ohio. The event, which brings together the rare disease community, will take place at the InterContinental Cleveland Conference…

June 16, 2021 News by Mary Chapman

Get Ready for NORD’s Patient and Family Forum, Set for June 26-27

Those who wish to gain practical tools for living optimally with rare diseases are encouraged to attend the annual Living Rare Living Stronger Patient and Family Forum, hosted by the National Organization for Rare Disorders (NORD) and set this year for June 26-27. The conference brings together patients,…

April 1, 2020 News by Hawken Miller

NORD Partners with ‘Sing Me a Story’ for July 18–20 Living Rare Forum

The Living Rare, Living Stronger Patient and Family Forum, originally set for May 14–16 in Cleveland, Ohio, has been postponed until July 18–20 because of the coronavirus disease COVID-19 pandemic. The event’s sponsor, the National Organization for Rare Disorders (NORD),…

Recent Posts

  • Brain activity may be biomarker for Rett treatment response
  • Waking up in the middle of the night to care for our late daughter
  • Families say access to dental care can improve quality of life
  • Design for 2nd part of Rett gene therapy TSHA-102 trial set
  • Why our daughter’s 8th-grade promotion is extra meaningful
  • Smaller brain volumes in Rett girls tied to clinical severity: MRI study
  • Taysha, FDA agree on next steps of REVEAL trial for Rett gene therapy
  • How strange to be having free time after years without it
  • Bone mineral density is low in girls, young women with Rett: Study
  • Proof-of-concept trial for Rett treatment expected this summer


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