U.S. Hunter Syndrome Brand Lead
Takeda Pharmaceutical Company Limited
Identifying the Ultra Rare
There’s rare and then there’s ultra-rare. That applies to both Allory Williams and the therapeutic area she works in. Mucopolysaccharidosis type II (MPSII), or Hunter syndrome, is an ultra-rare disease—occurring in approximately one in 162,000 births—but it presents with very common symptoms, such as a chronic runny nose, ear infections, and recurrent upper respiratory infections, which can easily be mistaken for other conditions. With prevalence rates indicating approximately 25 children being born each year with Hunter syndrome, the diagnosis of just one case can be like finding a needle in a haystack. Allory is doing her utmost to cull this haystack into a more organized bale so the journey to diagnosis might be just a little shorter.
Most recently, Allory is addressing this issue through a cross functional project that uses claims data and advanced analytics to more efficiently and effectively identify the HCPs with patients whose symptoms and clinical tests signal they may have undiagnosed Hunter syndrome. By narrowing in on these providers, Allory is able to serve them disease state messaging and raise their awareness of this degenerative condition, as well as drive them to Takeda’s website, help them engage with Takeda’s regional business specialists, and ultimately provide additional information that could lead to a diagnosis.
This process also offers insights into a physician’s perspective, which Allory channeled into developing an improved HCP website with a number of new features to provide access to vital information via a dosing calculator, an MOA breakdown, patient profiles, clinical trial information, a timeline/history of Hunter syndrome, frequently asked questions, and more.
When Allory realized that MPS Awareness Day during the pandemic would be different from normal, she helped lead a combined global campaign effort that included bioindustry partners throughout the world with an MPS presence in a unified campaign message to deliver key disease state awareness information. In conjunction with the MPS Society, these efforts increased access to patient resources and information, and undoubtedly provided much needed support to patients and their families.
Through these efforts and her unwavering commitment to those living with a rare disease, Allory is breaking down industry barriers to better serve the Hunter syndrome community.