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Dec. 2, 2015

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

Be a Hero: Help NORD Educate Current and Future Medical Professionals

Posted by Mary Dunkle

Keck Graduate Institute Students giving a presentation on Rett Syndrome, a rare disease.

Education has always been a key component of NORD’s mission and this year we expanded our outreach to two vitally important audiences – medical professionals and students preparing for health-related careers.

Today’s healthcare professionals are aware that they will encounter patients with rare diseases, and they are eager for information and resources to help them provide the best possible care. In a survey published last year, Frontline Medical Communications reported that 88% of more than 1,600 HCPs expressed a need for more rare disease information.

NORD’s approach to addressing this need is threefold:

  • Harnessing the power of our nearly 250 member organizations and their medical experts to educate about specific rare diseases and the patient/family experience;
  • Establishing innovative partnerships and collaborations with medical publishers and professional societies; and
  • Conducting outreach to medical students and others preparing for healthcare careers.

What Have We Accomplished this Year?

NORD-AMSA meeting-sign up for student membership-photo

NORD at the 2015 AMSA meeting

During 2015, NORD’s Department of Educational Initiatives partnered with Frontline Medical Communications, Medscape, and Rare Disease Report to reach millions of healthcare professionals with targeted information. We now have opportunities to create CME resources, and we are exploring innovative ways to use video, podcasts, telemedicine, and other media to convey the patient experience and connect rare disease experts with community physicians.

Our outreach to students included hosting a “Meet the Patients” event at the 2015 American Medical Student Association (AMSA) annual conference. We established a new free student membership and worked with rare disease clubs at Keck Graduate Institute and the University of Notre Dame. Through a new collaboration with the University of Connecticut, advanced science students will learn about rare diseases and sharpen their writing skills by working with NORD’s editorial team.


What’s Ahead for 2016?

With your help, we want to build on this momentum with expanded outreach to professionals and students. Specific opportunities include:

Patient/Caregiver Speakers Bureau

NORD has developed a Speakers Bureau of patients and caregivers with powerful stories that they are eager to share. We want to bring these speakers to classrooms across the US to educate and motivate future healthcare professionals. The intent is not to try to teach students about all 7,000 rare diseases but rather to encourage a different way of thinking that will promote earlier diagnosis and greater understanding of rare disease challenges.

Rare Disease Grand Rounds

NORD hopes to launch a pilot Grand Rounds program in 2016 to bring rare disease medical experts to hospitals across the US with the ultimate goal of reducing time to diagnosis and improving patient care.

While these new initiatives are exciting, our team will also continue to update and expand NORD’s longstanding educational services such as our Rare Disease Database, which provides patient-friendly information to millions of people through NORD’s website and others, including WebMD.

NORD’s Online Physician Guide platform, launched in 2013, will be expanded to cover additional topics. These guides are free, written by medical experts, and had 57,409 page views during 2015 with 24,615 visits from 164 countries.

With your help, NORD can continue to refine and expand its longstanding educational services while also launching exciting new ones at this moment in time when students and health professionals are eager to hear from us!


Your donations will support NORD’s efforts in continuing outreach to current and future medical professionals.

If you’re interested in making a donation, please click here.

2 Responses to “Be a Hero: Help NORD Educate Current and Future Medical Professionals”

  1. Mary Dunkle says:

    We will be adding physician guides but there will be other options, too. One of our goals is to obtain funding that would make it possible for NORD to create – with our members and their medical experts – innovative resources that use words, video and photos to promote earlier diagnosis and optimal treatment for all people with rare diseases, not just those who have diseases currently of interest to researchers. We hope to expand the section for medical professionals on NORD’s own website, and our publishing partnerships are giving us new opportunities to provide information directly to physicians and other medical professionals. Please feel free to contact me directly regarding how NORD may be able to help you, including to develop a physician guide.

  2. Nancy says:

    Will the expansion of your physician guide include the writing of additional rare disease physician guides? CADASIL only has a very small all volunteer organization and we are struggling to get a physician guide written. We would love to promote and help distribute a guide to the medical community, but we need assistance in the creation. Please help! (when I asked my representative she said we needed to find a funding partner who would give us a $25,000 grant. This is just not realistic for a disease with no treatment and no cure – pharmaceutical companies are not yet interested in us.)