Sen. Paul R. Feeney has been appointed to the Rare Disease Advisory Council by Senate President Karen E. Spilka. Feeney is one of only two Senators appointed to the council.
The purpose of the Rare Disease Advisory Council is to advise the governor, the general court and the Department of Public Health on the incidence of rare disease within the Commonwealth and the status of the rare disease community.
The council will be tasked with facilitating the research, diagnosis and treatment of rare diseases, in collaboration with the rare disease community; assessing the social and economic impacts of rare disease; and evaluating possibilities for improving rare disease care in the Commonwealth. This will include examining the current system of rare disease care to determine the benefits of early intervention and treatment; establishing the most appropriate method to collect rare disease data, including a database of all rare diseases along with known best practices for care; and promulgating recommendations to increase rare disease survival rates, improve quality of life and control risks of co-morbidities for rare disease.
“It is an incredible honor to be appointed to serve on the Rare Disease Advisory Council by Senate President Karen Spilka and to have the opportunity to continue advocating for patients with rare diseases,” said Feeney. “The rare disease community faces unique struggles due to the lack of access to needed therapies and treatments, and I look forward to partnering with my fellow council members to immerse ourselves in the field of rare diseases and lead with a patient-centered approach that focuses on the individual needs of this community. It is a privilege to be a part of this incredibly important council and I am eager to get to work on behalf of all rare disease patients.”
The council will share its findings with the public and health care providers to ensure they are sufficiently informed of the most effective strategies for recognizing and treating rare disease. The council will examine the feasibility of developing a rare disease information and patient support network in the Commonwealth to aid in determining any genetic or environmental contributors to rare diseases, as well as develop and maintain a comprehensive rare disease plan for the Commonwealth utilizing any information and materials received or developed by the advisory council.
“Massachusetts has long been a leader in health care innovation and delivery, but for too many residents with rare diseases, care and treatment can feel frustratingly out of reach,” stated Spilka. “Senator Feeney is thoughtful, diligent and an effective advocate for the people he serves. Those are precisely the qualities we need on the Rare Disease Advisory Council as we strive to provide more robust support and better outcomes for the members of the rare disease community.”
In the United States, rare diseases are classified as diseases that affect fewer than 20,000 people. According to the National Institute of Health, there are over 6,500 known rare diseases affecting the lives of approximately one out of every ten Americans. Rare diseases are notoriously hard to diagnose, meaning that patients often face years of incorrect diagnoses and wrong treatment plans before arriving at the correct diagnosis, if ever.
The Rare Disease Advisory Council was established by An Act promoting a resilient health care system that puts patients first (Section 26 of Chapter 260 of the Acts of 2020).