Summary by Marisa Truong.
On March 9, 2012 we had the pleasure of inviting Mary Dunkle, VP of Communications at the National Organization for Rare Disorders (NORD) come speak to the Rare Health Exchange (RHE) class and Center for Rare and Neglected Diseases (CRND) faculty. The focus of Mrs. Dunkle’s seminar was the role of the rare disease patient community and how NORD helps facilitate that.
NORD is a non-profit organization that was established in 1983 by patient advocates who supported the Orphan Drug Act. It represents all Americans who have or are affected by a rare disease and provides support to patient services organizations (PSOs) as well as patient groups who do not have an official PSO. They help provide education tools for patients, students, physicians, and anyone working in the health care field that cares for rare disease patients. They also help mentor patient organizations increase awareness, connect to physicians, find current clinical trials to participate in, and find research projects they can raise money for.
A few current advocacy initiatives NORD is involved with include the Transforming the Regulatory Environment to Accelerate Access to Treatment (TREAT) Act, which is an act that will aid in accelerating the process of patient access to getting new treatments or life-saving technologies. Another initiative they support is Prescription Drug User Fee Act (PDUFA) which is a law allows the FDA to collect fees from drug companies who want the FDA to review their product. The bill must be approved this year so NORD is very excited to be involved with its process.
Aside from legislation initiatives, NORD has made many efforts to educate health care professionals in order to improve the care for rare disease patients. They have created a NORD Physician Guide (www.nordphysicianguides.org) to provide educational resources to health care physicians make the diagnoses process as quick and effective as possible. Along with educating health professionals, they provide grants to researchers at universities to start new research in rare diseases. The seed grants they provide play an important role in accelerating the process towards developing new drugs and therapies.
Most importantly, NORD serves and supports the whole rare disease community of the US and has collaborative links to many national and international rare disease organizations around the globe. In the US, they hold regional conferences every year for patients to learn about the research being done in the area of their rare disease, meet with other patients to share their experiences and expand their support group.
This summary only highlights a few of the tremendous efforts NORD has made for the rare disease community. They have done incredible work over the years and we hope to continue to work with them in the future. The students all appreciate the opportunity to learn about more ways they can become involved in advocacy initiatives for rare disease patients. In order to learn more about NORD and how you can be a part of advocating for the rare disease community, please visit their website www.rarediseases.org.