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Jun. 14, 2016

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

NORD Speakers Bureau

Posted by Lisa Sencen
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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 education@rarediseases.org.

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

8 Responses to “NORD Speakers Bureau”

  1. reta badey says:

    My 38 Year old son had Gigantism and then Agromegaly. Tumor was removed and back surgery to repair spinal stenosis, scoleosis, crushed vertebra, unstable discs, malformation in cervical vertebreas. He is very depressed and has been off his meds and is in terrible pain.. can you recommend a Dr. and psychiatrist in the No VA area? He recently lost his health insurance to to being unable to work.

  2. Erica Thiel says:

    Ho, may I ask can Rare disease Patients sign up as potential speakers?
    I am an MPS I Aten Yates Adult and a Patient partner w the Running for Rare Team.
    I’ve previously done a few speaking engagements for Genzyme and at smaller family medical mtngs in Mn.
    Thanks!

    Erica
    http://www.rarelydefined.blogspot.com
    thielerica@gmail.com

  3. Looking for speaker to present to prescribers and seperately to mito patients and their families as part of our West MI Mito Support Group. We hope to have and Oct and Mar educational event each yr, and then a Mito Social for patients and families to meet and greet in the summer.

  4. Lorena estrada says:

    Hi my mom recently was disnoticade with the deasse of Addison is very hard to fine the medicina.

    • Christina Jensen says:

      Hi Lorena,

      Thank you for writing! NORD is not a medical provider or health care facility and thus can neither diagnose any disease or disorder nor endorse or recommend any specific medical treatments. Patients must rely on the personal and individualized medical advice of their qualified health care professionals before seeking any information related to their particular diagnosis, cure or treatment of a condition or disorder. The resources listed on this report on Addison’s Disease may be helpful to your mother. http://rarediseases.org/rare-diseases/addisons-disease/

      I hope that you find this information to be helpful.

      Best Regards,

      Christi Jensen-Marketing Coordinator at NORD

  5. I am a member of the rare community. I have Systemic Degos Disease. I have been very lucky to be diagnosed prior to any debilitating complications. I am also receiving effective treatments. I am able to continue working full time as an RN. I would be very interested in presenting at my Rehab organization and other nursing organizations. I know nurses are always looking for required CEUs for license renewal.

  6. yael ripstein says:

    i have a rare disease aHus and i wanted to become more involved and help other pple with rare diseases like mine
    please get back to me
    thank you
    yael ripstein

    • Christina Jensen says:

      Yael,

      Thank you for writing. We are happy to see that you are interested in helping others with rare diseases. Please reach out to education@rarediseases.org in order to learn more about NORD’s speakers bureau program. Additionally, you may be interested in looking into Running for Rare’s Community Partner program. This program provides you with the chance to raise awareness for your diagnosis as well as raise general awareness for the rare disease community. Please visit rarediseases.org/runningteam to learn more about that program.

      Thank you!

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