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Jun. 14, 2016

TOPIC: Featured News, Get Involved, Medical, Patients & Members

NORD Speakers Bureau

Posted by Mary Dunkle

Need a Speaker for Your Classroom or Event? Contact NORD!


Teachers, medical school professors, and community members seeking speakers to talk about rare diseases in the classroom or at community events can contact NORD for help. Working closely with its 250 member organizations, NORD now has a Patient/Caregiver Speakers Bureau to match seasoned volunteer speakers with opportunities in their local communities.

The program was established earlier this year in response to many requests NORD was receiving to participate in classroom and community events. The speakers, who are recommended to NORD by its member organizations, are individuals with experience in public speaking who are eager to share their stories of living with a rare disease. The information they provide about specific diseases has been vetted for accuracy by the medical experts who serve as advisers to NORD’s member organizations. Most of the speakers are patients or parents or spouses of patients.

“This is an important part of NORD’s educational outreach,” said Mary Dunkle, Vice President of Educational Initiatives at NORD. “Our members have helped us identify an excellent team of speakers living at locations throughout the U.S. who are committed to education and to promoting greater understanding and awareness.”

By taking speakers into the classroom at schools, universities and medical schools, NORD hopes to promote earlier diagnosis in the future for people with rare diseases, many of whom go for years without a diagnosis today. Students who have heard the patients’ stories tell NORD the experience will stay with them longer than simply reading about a rare disease in a textbook.

Having speakers at community events helps promote general education and awareness of rare diseases and of the experience of living with a rare disease.

“We encourage anyone seeking a rare disease speaker for a school or community program to contact NORD’s Educational Initiatives Department,” Dunkle said. “With the broad reach of NORD and our member organizations, we are able to identify great local speakers in almost any community in the U.S.”

To request a speaker for your classroom or event, write to

Read the press release published when NORD’s Patient/Caregiver Speakers Bureau was launched.