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Partnerships

NORD believes in the power of collaboration. It is the foundation upon which NORD was built.
NORD works with partners in the patient community, government, academia, and industry who share
the ultimate goal of identifying, treating, and curing rare diseases.  In addition to the partnerships listed below,
NORD works with many national partners to achieve its advocacy goals.

 

 

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EURORDIS-Rare Diseases Europe

In 2009, NORD entered a strategic partnership with the EURORDIS- Rare Diseases Europe, which was just renewed in March, 2015. The goal is to support policies and practices that:

  • facilitate research
  • encourage development of innovative treatments
  • advance awareness and understanding of rare diseases
  • ensure patient access to care
  • encourage a more patient-centered healthcare system
  • help break the isolation of the people living with rare diseases
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Frontline Medical Communications

NORD partners with Frontline Medical Communications to provide information about rare diseases to physicians and other healthcare professionals. Recent publications include the following.

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Japan Patients Association (JPA) Partnership

In January 2012, NORD signed a Memorandum of Understanding with the Japan Patients Association, an organization that represents patients with rare and “intractable” diseases (chronic and not responding to treatment) in Japan.

A declaration of shared commitment to improving the lives of rare disease patients and families, the partnership specifies that the two organizations will share information about current advocacy initiatives and seek ways to increase understanding and communication between rare disease patients and patient organizations in Japan and the U.S.

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The Mighty

NORD’s partnership with The Mighty strives to help raise awareness of rare diseases and connect The Mighty’s wide-reaching readership with NORD’s educational, advocacy and other resources. The Mighty is a story-based health community focused on improving the lives of people facing disease, disorder, mental illness and disability. We encourage you to submit a story to The Mighty and make your voice heard.  Visit the rare diseases page on The Mighty’s website to read others’ stories.

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Rare Diseases International

Rare Diseases International (RDI) is the global alliance of people living with a rare disease of all nationalities, across all rare diseases. RDI brings together national and regional rare disease patient organistions from around the world, as well as international rare disease-specific federations to create the global alliance of rare disease patients and families. RDI’s mission is to be a strong common voice on behalf of all people living with a rare disease around the world, to advocate for rare diseases as an international public health priority, and to represent its members and enhance their capacities.
NORD is a founding member of RDI and has representation on the governing Council alongside the European Organisation for Rare Diseases (EURORDIS), the Canadian Organization for Rare Disorders (CORD), the Indian Organisation for Rare Diseases (IORD), DEBRA International, Rare Voices Australia (RVA) and the Ibero-American Rare Disease Alliance (ALIBER).