Q&A With Mary Dunkle, Vice President for Communications at NORD (National Organization for Rare Disorders)
What is Rare Disease Day? How has the day helped advance advocacy efforts for rare diseases?
Rare Disease Day is an international awareness day to bring widespread recognition of rare diseases as a global public health challenge. The day is celebrated on the last day of February every year. In 2013, it will be observed on Feb. 28.
Can you tell us a little bit about Rare Disease Day’s history and the Orphan Drug Act?
Rare Disease Day was established in Europe by 2008 by the European Organisation for Rare Diseases (EURORDIS). The following year, EURORDIS asked NORD to establish and sponsor it in the U.S. Since then, it has spread worldwide, and last year, Rare Disease Day was observed in more than 60 countries. Each country has a national sponsor, and the sponsors meet beforehand each year to plan an annual theme, shared messages and other activities so that people are celebrating in similar ways all around the world. This year’s observance of Rare Disease Day will have special significance in the U.S. because 2013 marks the 30th anniversary of the Orphan Drug Act. This is a law, enacted in 1983, that provides financial incentives that make it possible for pharmaceutical and biotechnology companies to make the necessary investment to develop products for small patient populations. Those incentives include, for instance, seven years of marketing exclusivity if a product is approved as an orphan.
What is the meaning behind this year’s theme “Rare Disorders Without Borders”?
The theme was selected by the global planning committee, and the intention is to demonstrate global solidarity of the rare disease community. We feel that it’s very important to have people all over the world promoting the same theme and messages each year. One of NORD’s consistent messages to our members is: Alone we are rare. Together we are strong. The same is true for the global rare disease community.
What opportunities are available for life sciences companies interested in getting involved?
Rare Disease Day celebrates the partnership among patient organizations, life sciences companies, academic researchers, practicing clinicians, NIH, FDA and all the other rare disease/orphan product stakeholders. We all share the same end goal — safe, effective treatments and cures for patients. Many companies will host events for their employees, and NORD is providing some resources such as a video from our president thanking company employees for the work they do on behalf of patients. Also, this year we are promoting State House events in other states, similar to the one MassBio co-hosts. Life sciences companies in those states may want to be involved in those events. The states where events are currently being organized are California, Connecticut, New Jersey and Texas, in addition to Massachusetts. Companies may also want to send out press releases in support of the day, and NORD is happy to make a press kit and/or sample release available for that purpose. We also have some pins, wristbands and notepads to make available to those hosting events.
How can individuals get involved in the day?
On the national website — RareDiseaseDay.US — we have posted suggestions for individuals. For instance, we have created suggestions for bringing Rare Disease Day into the classroom with elementary, middle school and high school students. We encourage teachers to use these resources and parents to make their children’s teachers aware of them. We also have a “Handprints Across America” photo gallery on the website where people can download a free flier with the Rare Disease Day logo and submit a photo of themselves holding it. We have some great photos already. And we’ll have a 24-hour advocacy campaign on Rare Disease Day through which individuals will be able to write to their elected officials. Individuals are planning special events in communities across the U.S. We’ll be posting those on the national website so that people can see if there is an event planned in their community.
MassBio will host a Rare Disease Day event at the State House
on Feb. 28 at 2 p.m. All are welcome — no registration
required. Visit www.massbio.org for more information.