WHEREAS, rare diseases are chronic, progressive, debilitating, disabling, severe, and often life-threatening; and
WHEREAS, rare diseases affect the entire family of an individual patient as they endure on-going stress and isolation while managing difficult medical and financial issues; and
WHEREAS, rare disease information is scarce and research is insufficient; and
WHEREAS, former Trustee Stephanie Hunt has worked tirelessly to campaign for the cause and impact of rare diseases at the national and state level, including being recognized by the U.S. Congress for her advocacy work; and
WHEREAS, rare disease patients need advocates, such as Ms. Hunt, to bring about awareness; and
WHEREAS, rare disease patients are sometimes denied their right to the highest attainable standard of health and continue to advocate their need to overcome common obstacles; and
WHEREAS, Rare Disease Day 2021 recognizes the crucial role that patients play in voicing their needs and in instigating change that improves their lives and the lives of their families and careers; and
WHEREAS, February 28 will be recognized as the twelfth annual Rare Disease Day in Pittsfield Township;