SHREWSBURY – State Representative Hannah Kane (R-Shrewsbury) was recently honored by the National Organization of Rare Disorders (NORD) with a “Rare Impact Award.”
This recognition came after Kane worked with Rep. Joseph McKenna (R-Webster) to sponsor and pass legislation that created a “Rare Disease Advisory Council” in Massachusetts.
That Council advises the Governor, the General Court, and the Department of Public Health on the incidence and status of a rare disease in Massachusetts.
“The RDAC will be a powerful tool in creating a comprehensive rare disease network and bolstering education and attention to the cumulative mass and prevalence of rare diseases,” a press release from Kane’s office said.
Receiving her NORD award at a virtual ceremony on June 28, Kane thanked the wide array of individuals who helped pass the RDAC legislation.
“As parent of a daughter with two chronic diseases, I recognize how challenging it can be to navigate getting a diagnosis and accessing care for a non-rare disease – and I have learned from advocates, caregivers, and patients themselves just how much more difficult it is with a rare disease,” Kane said. “With the tremendous advocacy work of NORD and partner organizations, with the ongoing establishment of additional Rare Disease Advisory Councils in states across the country, and with the united strength of the rare disease community, I am hopeful that no rare disease patient will ever feel alone, or without hope for a bright future, and I am committed to doing all I can to make it so.”
NORD has worked for more than 30 years to promote the diagnosis, treatment and cure of rare disorders. In addition to Kane, it has recognized a number of various patients, caregivers, innovators, advocates, legislators and other leaders over the years.