CHI is presenting a series of blog articles on the speakers who will be addressing families attending the Fourth Congenital Hyperinsulinism Family Conference March 17 and 18, 2012, in Philadelphia, PA. In this article, we focus on advocacy issues and present Mary Dunkle, Melanie Cohen, and Kristin Crossland.
Advocacy is one of the most important elements of the work of a patient organization. When the disorder is rare, it is all the more incumbent upon affected families to get involved. If not us, who will do the work of ensuring that all people living with congenital hyperinsulinism (HI) receive: a timely diagnosis, state-of-the-art-treatment, necessary medications and devices, and the possibility of a cure?
At the Fourth Congenital Hyperinsulinism Family Conference, we will all become advocates! CHI and CHOP have asked Mary Dunkle, a seasoned professional in the field of rare disease advocacy, to guide us in this process. Mary is Vice President of Communications at NORD, the National Association of Rare Disorders, and in that capacity has a fantastic grasp of all the elements of a fine advocacy program. Mary will share information about how we can work with different governmental branches, committees, and organizations to create a better climate for patients with HI.
Mary will offer examples from different rare disease communities. She will provide us with information on how our organization can work effectively with the National Institutes of Health (NIH), the Federal and Drug Administration (FDA),the Federal Government, the U.S. Congress, local government, pharmaceutical companies, medical societies, etc. Mary understands that our concerns go far beyond U.S. borders. She will share her thoughts on how we can work internationally.
Melanie Cohen, the fantastic development officer for the Congenital Hyperinsulinism Center at CHOP who has attended many of our events, Kristin Crossland, a wonderful rare disease advocate that many of you have gotten to know on our blog, and I will be on the panel with Mary and we will be looking at advocacy issues specific to HI. We will ask Mary for guidance on how the CHI community can work to prevent future intermittent drug shortages, what we can do to help reduce the time it takes for a rare disease drug to come to market, how we can most effectively communicate with governmental representatives about newborn glucose protocols, how we can foster more research, and how we can further support the HI centers of excellence in the U.S. and around the world. Mary will also emphasize the importance of working with NORD. “Alone we are rare. Together we are Strong.”
