Dina Thachet

Board Member and Patient Advocate, Lupus and Allied Diseases Association (LADA)

Dina Thachet is honored to be a member of the ICER Patient Council, representing Lupus and Allied Diseases Association (LADA). She is a consummate professional who uses her talent, skills and lived experience to make a difference for others, and realized early on that her purpose in life is to be of service to others.

With a degree in Early Childhood Studies, special certification in working with medically fragile children and children with special needs, and as a Board Certified Child Life Specialist (CCLS), she has dedicated her career to bringing hope and healing to children and families facing incredible health challenges. She had a highly successful career at Make-A-Wish Illinois as the Medical Outreach Manager for over 25 years, during which she built and implemented a nationally recognized and replicated outreach department and strategy. She was responsible for successfully educating the medical community about the healing impact of wishes on children with critical or life-threatening medical conditions and ensuring that they were referred to Make-A-Wish. Dina’s efforts, dedication and passion helped bring hope, resilience and joy to well over 18,000 children and their families. In addition to being employed by Make-A-Wish, she was also an active wish-granting volunteer, and fulfilled over 120 wishes in her spare time.

On a personal level, Dina is a strong leader in the lupus patient advocacy and advisory community. She was diagnosed with Systemic Lupus Erythematosus (SLE), Stage IV Lupus Nephritis and fibromyalgia over 32 years ago, after being hospitalized for a month, pronounced clinically dead and given a 5-year prognosis. Dina courageously shares her journey as a lupus nephritis thriver to help patients and families, physicians, elected officials, pharma and others to increase awareness, inspire empathy and improve treatment, outcomes, and quality of life for lupus patients. Soon after diagnosis and after coming to terms with having been pronounced dead, yet surviving, and being given a 5-year prognosis, Dina made a very conscious decision to use her experience and voice to positively impact others diagnosed with lupus, and to ensure that her journey and all that she had endured were not in vain. She continues with the same vigor and grit.

Dina has been an advocate for over 25 years. For many years, she volunteered with the Lupus Research Alliance (LRA), and advocated on Capitol Hill to fight for research dollars for better treatment options specifically approved for lupus and lupus nephritis. She was also a member of the LRA MultiCultural Outreach Task Force (MCOTF), working to increase and improve access and equitable care for patients in under-resourced and underrepresented communities.

Since 2019, she has been a proud patient advocate with LADA, and was appointed to the LADA Board of Directors in 2023. In the spring of 2021, she was honored to represent LADA and provided compelling oral and written comments for the ICER Draft Evidence Report for two novel treatments for lupus. She has participated in patient advisory efforts with numerous pharmaceutical and biotech companies over the years to ensure that the patient experience and suggestions are factored into drug or treatment development. Dina is exceedingly passionate about Diversity and Equity in all aspects of her life, and is a staunch advocate for addressing and eliminating health disparities, and for equitable health care and access, especially as it relates to minority health.

Dina’s health journey has been further complicated with diagnoses of endometriosis, a pituitary adenoma and secondary infertility due to chemotherapy treatments for the lupus nephritis. She believes that every individual who is diagnosed with any medical condition who plans to or might one day wish to become a parent, or become a parent again, is given information, support, and fertility preservation options prior to starting any treatments, especially those with known or potential negative impact on reproduction or fertility. Her own journey to becoming a mother was fraught with despair, adversity and losses that she knows would have been prevented had she been appropriately advised and supported when first diagnosed.

That said, despite 13+ years of fertility challenges, loss and despair, Dina is now the proud and blessed mother of her miracle baby, now 8-years old, and they live in the suburbs of Chicago with her husband. When she is not advocating or running after Isla, she enjoys cooking and baking, throwing dinner parties, antiquing/thrift shopping, volunteering, reading and travelling.