Rare Disease Report

NORD and Its Members Are Expanding Their Outreach to Medical Professionals and Students

SEPTEMBER 15, 2015
Guest post by NORD
NORD and its more than 230 member organizations are increasing their outreach to medical professionals in an effort to promote earlier diagnosis and optimal treatment for patients with rare diseases. At the same time, NORD has established a new free membership for medical students and others preparing for healthcare careers.

“We’re delighted at the response we’re receiving from both professionals and students,” said Mary Dunkle, NORD’s vice president for educational initiatives. “While NORD has long been involved in physician education, and – with the help of dedicated rare disease experts – has published three medical textbooks over the years, we’re now looking at new styles of learning and new ways of packaging information to reach a larger medical professional audience.”

One example of NORD’s efforts is a new video on a rare movement disorder known as neurogenic orthostatic hypotension (nOH). Patients with this condition may sometimes go undiagnosed because the condition is little known and the symptoms, while potentially serious, may be subtle.

NORD initially created the video for patient education but has come to realize that, because it includes interviews with medical experts and patients who describe their symptoms, it also has value for professionals. Now, NORD is looking at other video opportunities as an alternative to, or to augment, the online physician guides it publishes on a website established two years ago (NORDPhysicianGuides.org).

Another avenue being explored is partnering with professional medical societies. NORD’s policy team frequently works closely with professional societies whose mission aligns with NORD’s. NORD is exploring ways to expand those relationships to the realm of education.

The free student membership was launched this year at the annual conference of the American Medical Student Association (AMSA) in February. NORD hosted a “Meet the Patients” event at its booth, and several of its members participated.

“The students were wonderful and genuinely interested in learning about rare diseases,” Dunkle said. “Our handouts included an op/ed piece by medical student Sophia Walker on “The Importance of Rare Disease Education” and a blog post by another medical student, Colton Margus, entitled “Thoughts From a Medical Student: Helping Future Physicians Understand Rare Diseases.

Since then, NORD has published the first issue of a special newsletter for students with many of the articles written by students at campuses across the U.S. Requests for student membership – and for NORD to bring patient speakers to campus – have been steadily arriving.

Students are serving as advisors to NORD to guide its efforts. For instance, the founders of a rare disease club at the Keck Graduate Institute have provided tips to others wishing to start such a club. For the past few years, students in a premedical seminar course at the University of Notre Dame have been assisting NORD with updating reports for its Rare Disease Database. This year, students at the University of Connecticut will do the same. In both cases, the information is reviewed by medical experts before being published.

Innovative Resources Being Developed by NORD’s Members for Medical Professionals

Many of NORD’s member organizations are working with their medical advisors to develop innovative educational resources for physicians and other medical professionals. For example:

IDF Consulting Immunologist Program: A Free Consult Service for Physicians

The IDF (Immune Deficiency Foundation) Consulting Immunologist Program provides an opportunity for physicians to consult with expert clinical immunologists about patient-specific questions and to obtain valuable diagnostic, treatment and disease management information. This physician-to-physician service has provided hundreds of free consults to physicians since it was established.

Typical questions are about newly diagnosed patients or someone who does not seem to fit any specific primary immunodeficiency diagnosis. All questions are welcomed, and requests are forwarded to a skilled immunologist working with the program. For more information or to submit a request for a consult, go to www.primaryimmune.org/consult.

Speaking of NEC Podcast Series

Produced by The Morgan Leary Vaughan Fund and funded by the Petit Family Foundation, Speaking of NEC is a series of one-on-one conversations with relevant necrotizing enterocolitis (NEC) experts – neonatologists, clinicians and researchers – that highlights current prevention, diagnosis and treatment strategies for NEC, and the search for a cure. These podcasts may be accessed on the Morgan Leary Vaughan Fund website.

Partners in FTD Care

This initiative of the Association for Frontotemporal Degeneration is intended to educate professionals about FTD and develop best practices in community care. The materials are developed by a committee of clinical nurse educators, social workers, and family and professional caregivers with contributions from specialists in speech-language pathology, occupational therapy and hospice. The initiative has three elements:
  • Introductory educational materials
  • Quarterly e-newsletters featuring FTD case studies
  • An online forum for those developing interventions
Learn more about this on the AFTD website.

PV/MMP: A Clinical Overview for Dental Students and Professionals

This video from the International Pemphigus and Pemphigoid Foundation features David Sirois, DMD, PhD, and provides an overview of PV (pemphigus vulgaris) and MMP (mucous membrane pemphigoid). The video is part of a broader awareness campaign being conducted by the Foundation that includes sending patient educators to dental schools across the US to share their stories.

General dentists have a unique opportunity to shorten diagnosis times for PV/MMP patients by recognizing symptoms and referring patients for biopsy. Because dental professionals are such an important part of the IPPF’s outreach, the Foundation also has a Dental Advisory Council, whose members are listed on its website.

Promoting Awareness of Treatment Guidelines: Congenital Hyperinsulinism International

Earlier this year, the Pediatric Endocrine Society published recommendations regarding the evaluation and management of persistent hypoglycemia in neonates, infants and children. The guidelines have the potential to save lives and prevent needless brain damage through monitoring of blood sugar levels, particularly in the days after birth. To draw attention to the guidelines, Congenital
Hyperinsulinism International has published its own statement of support for the recommendations. The organization’s survey of its member families found that 60% of patients were not diagnosed during the newborn period.

These are just a few of the excellent resources being developed by NORD members for medical professionals. Watch for others in future columns.

Stay informed on the latest rare disease news and developments by signing up for our newsletter.
Copyright © RareDR 2013-2018 Rare Disease Communications. All Rights Reserved.