Recently, NORD’s partners at Frontline Medical Communications (FMC) shared the results of a survey conducted among physicians who received a Rare Neurological Disease Special Report co-published by FMC and NORD.
Nine out of 10 respondents indicated that the content was somewhat or very useful, with 91% saying it would help them improve patient care, screen patients more proactively and treat them more effectively.
These findings are consistent with responses to a survey conducted by FMC among physicians and other healthcare professionals last year in which 88% of 1,632 respondents agreed that there is a need for more professional content on rare diseases. In that survey, 75% of the HCPs acknowledged that they have patients with rare diseases and 78% said they had searched the medical literature for information about rare diseases during the previous 12 months. read more >
The final 2015 State House Event took place yesterday. Now that all of the numbers are in, take a look at (and share!) this year’s highlight reel & recap:Together, we planned and hosted 32 State House Events in capitol buildings across the U.S., up from last year’s 12 State House Events
With all of our efforts, Rare Disease Day continues to grow! Thank you to everyone who planned and attended events, joined the social media campaign, changed their profile photos, shared infographics, and got involved. As the official U.S. sponsor of Rare Disease Day, NORD thanks everyone who came together to support this truly community and group effort. Together, we are strong!
Keep the Momentum Going read more >
Rare Disease Day is here! Celebrated on the last day of February–the rarest day on the calendar–this is the one day every year when the world comes together to improve the lives of people living with rare diseases.
NORD is proud to work with our partners as the official sponsor of Rare Disease Day in the U.S. Here are a few ways you can get involved to help make this the most impactful Rare Disease Day yet.
Social media awareness - Together we can grow awareness. Change your profile picture to the ”I SUPPORT Rare Disease Day” badge (pictured) and encourage others to do the same. Share photos, updates and videos using the hashtags #RDD2015, #RareDiseaseDay and #1in10. You can find us on Twitter @RareDayUS, Facebook /RareDiseaseDay.US and instagram @rarediseasedayUS.
Sophia Walker, a medical student and NORD volunteer, has written an op-ed piece on “The Importance of Rare Disease Education” that was published this afternoon on Medscape and is being promoted specifically to medical students.
The article is one of several currently being developed by NORD staff in collaboration with Medscape as part of NORD’s expanded outreach to medical professionals to promote earlier diagnosis and optimal treatment for patients.
A student at the University of Connecticut School of Medicine, Sophia became interested in rare diseases while in high school after hearing a NORD staff member speak.
On a related note, NORD representatives — and several rare disease patients — will participat in the American Medical Student Association annual convention this week in Arlington, Virginia. NORD will host a “Meet the Patients” event in its booth at the convention.
The presentation will be webcast and can be viewed online at https://videocast.nih.gov/.
RareDisease Dialog is the official blog for the National Organization for Rare Disorders (NORD). NORD’s staff and friends will share information of interest to the entire rare disease community.
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