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May. 10, 2019

TOPIC: Press Releases, Featured News, Patients & Members

National Gathering of the Rare Disease Community and Health Professionals Launched with 2019 Living Rare, Living Stronger | NORD Patient & Family Forum Featuring the Rare Impact Awards

Posted by Valaree DonFrancesco

Danbury, CT, December 3, 2018 – The National Organization for Rare Disorders (NORD) has announced a meeting for patients, caregivers and the medical community. The 2019 Living Rare, Living Stronger NORD Patient & Family Forum will take place June 21 – 23 in Houston, Texas. In addition, the 2019 Rare Impact Awards will take place on June 22, in conjunction with the Forum in Houston.


Living Rare, Living Stronger will be held in a different part of the U.S. each year, bringing the rare disease community together with physicians, medical students, and allied health professionals for a program of learning, sharing and connecting. It will have something for the entire rare disease community, including:

  • Patients and their families (children welcome)
  • Caregivers
  • Medical professionals (clinicians, nurses, pharmacists, and more)
  • Students (medical, genetic counseling, and more)
  • Patient organization leaders and patient advocates
  • Researchers and academics
  • Industry

The agenda will include sessions in which patients and families can gain insights and practical tools for living their best lives with rare diseases, with tracks provided for newly diagnosed patients, long-term patients, caregivers and physicians/medical students. It will also be an opportunity for bonding and fun, with kids programming, a welcome dinner party, a wellness room with yoga and workshops.


“Serving patients and families by acting as a connector to support and information has long been integral to our mission at NORD,” said Peter L. Saltonstall, President and CEO of NORD. “With Living Rare, Living Stronger, we are excited to be bringing back the type of patient and caregiver focused live programming that was one of our hallmarks for many years.”


Each year, NORD honors those making a difference in the fight against rare diseases with Rare Impact Awards. In 2019, the RIA celebration will move from Washington, DC to Houston in conjunction with Living Rare, Living Stronger. Nominations for Rare Impact Awards are open until January 11 and can be submitted here:


To sign up for updates on Living Rare, Living Stronger and the Rare Impact Awards, including agenda information and sponsorship opportunities, click here. Registration will open in early 2019.

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