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     

DANBURY, Conn., Dec. 3, 2018 /PRNewswire/ -- 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.

National Organization for Rare Disorders (NORD) logo. (PRNewsFoto/National Organization for Rare Disorders (NORD))

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 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.

About the National Organization for Rare Disorders (NORD)®

The National Organization for Rare Disorders (NORD)® is the leading independent advocacy organization representing all patients and families affected by rare diseases.  NORD is committed to the identification, treatment and cure of the over 7,000 rare diseases, of which only 5% have an FDA-approved treatment or therapy. Rare diseases affect 25-30 million Americans, or 1 in every 10 people. More than half of those affected are children.

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SOURCE National Organization for Rare Disorders (NORD)


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