In the world of rare disease and orphan drug research, it’s incredibly important for patient groups and industry to collaborate in order to best serve the patient community. With a widespread and niche patient base, pharma and biotech need to work with patient groups in order to best access patients for clinical trials. Similarly patient groups need to work with industry in order to communicate the needs and issues that the patients they represent face on a daily basis. And, let’s not forget the value of coming together with other patients to share stories and celebrate each other’s successes.

HNF is a valued media partner of the upcoming World Orphan Drug Congress USA, taking place in DC on April 10-11. Constituents and patients participate in the exhibition and series of seminars for free. This is a great opportunity to meet others with CMT as well as other conditions and industry participants. The seminars cover topics like patient registry collaborations, establishing relationships with physicians, the truth about insurance, fund-raising for research and much more. With speakers from Global Genes Project, the Alliance for Patient Advocacy, the Tuberous Sclerosis Alliance and more, these free seminars are not to be missed. To register your FREE place go to or for more information visit