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Jan. 18, 2016

TOPIC: Featured News, Get Involved, Patient Stories, Patients & Members, Press Releases

NORD Establishes Rare Disease Patient/Caregiver Speakers Bureau

Posted by Mary Dunkle

speakers-bureau-quoteThe National Organization for Rare Disorders (NORD) has established a Patient/Caregiver Speakers Bureau through which volunteers will share their stories to promote better understanding of the challenges of living with a rare disease.

Speakers will be paired with opportunities to speak in classrooms, on university or medical school campuses, or at local club or community events. NORD will work with its approximately 250 member organizations to identify speakers.

“Our patients and families have very compelling stories, and we think it’s important – especially for students preparing for healthcare careers – to hear those stories,” said Mary Dunkle, NORD vice president of educational initiatives.

While NORD has been actively involved in education since it was established in 1983, the Speakers Bureau reflects increased emphasis on community and classroom outreach. The purpose is to promote earlier diagnosis, better understanding of the challenges, and improved access to treatment, services and resources.

“Our goal is to educate current and future medical professionals about rare diseases,” said Dunkle.

All invitations to speak will be welcomed. Since educating future medical professionals is a strategic priority for NORD, opportunities to speak at universities or medical schools will be of particular interest, Dunkle said.

In a blog written for NORD earlier this year, third-year medical student Colton Margus wrote that “Medical students actually learn a great deal about orphan diseases in our coursework already, but that education is too often limited to the corresponding mutations and common clinical presentations tested on licensing exams. We have far less exposure to the people behind the ailments – the children and families waiting desperately for a diagnosis and treatment.”

The purpose of the new Speakers Bureau is to convey the patient/family experience while also educating about specific pediatric and adult rare diseases.  Programs may feature an individual speaker, a family, or a panel. Speakers will share their experiences and the impact of their rare disease on daily life.

A non-profit organization, NORD provides advocacy, education, patient services and research on behalf of the 30 million Americans with rare diseases and those seeking to improve their lives. In addition to educational resources for patients and families available on its website ®(, NORD publishes online disease-specific guides and other resources for medical professionals.

To learn more or schedule a program, write to

3 Responses to “NORD Establishes Rare Disease Patient/Caregiver Speakers Bureau”

  1. Alycia Gividen says:

    Me and my three sister and one each of our children all have XLH…one of the 20 rare diseases picked for the History Study NORD just release today to the press. I would love to be a part of that history study as well as being involved in this patient/caregiver speaker bureau in some capacity. Speaking to future doctors or existing doctors about our disease and the daily struggles we face now as we age. Me and my two siblings were part of a six year research study when we were young children at Mayo Clinic in Rochester. We don’t know whatever came of that study…but we are all so eager to find some way to find a better quality of life than what we currently have. The chronic pain and crippling condition at such a young age is hard to handle sometimes:( please let us get involved and use our family history to somehow help. Our father just passed 2 years ago and he was one of, if not the first to be diagnosed in the US.

    • Christina Jensen says:


      Thank you for reaching out and we’re happy to see your interest! In order to participate in the XLH Network Inc.’s Natural History Study, please contact the organization directly. You can find their information on their website here:

  2. Brenda morales says:

    I got bells palsey in 03 . I have paralysis on my left side of my face. Can I get any help now with my damaged facial nerves?