Living with hypoparathyroidism and working together to overcome it — ASN Events

Living with hypoparathyroidism and working together to overcome it — ASN Events

Living with hypoparathyroidism and working together to overcome it

Living with hypoparathyroidism and working together to overcome it (#229)

Roderick Clifton-Bligh ¹ , Patty Keating ² , Michele Rayes ² , Nicholas Love ³

Royal North Shore Hospital (RNSH) and The University of Sydney, Sydney, NSW, Australia
Hypoparathyroidism Association, Frisco, TEXAS, United States
Chairman, CaSR Patient Support, Canberra, ACT, Australia

In this Discussion Panel we will review the burden of disease encountered by patients with Hypoparathyroidism regardless of cause and highlight some of the key problems encountered by patients who are either untreated or receiving conventional medical therapy. We will go on to consider how patient groups and clinical researchers can team together to design informative clinical trials and achieve timely outcomes. Finally, we will explore patient perspectives on new therapies, including long-acting PTH peptides, Type-1 PTH receptor activators, and calcium-sensing receptor inhibitors (calcilytics).

Authors contributing to this presentation.

Clifton-Bligh, R

Prof Roderick Clifton-Bligh is Head of the Department of Endocrinology at Royal North Shore Hospital, and conjoint professor in Medicine at the University of Sydney. He has been a clinician researcher since completing a PhD in the genetics of thyroid disorders at the University of Cambridge in 1998. His research focuses on the molecular bases of endocrine neoplasms, including Multiple Endocrine Neoplasia syndromes, thyroid cancer, phaeochromocytoma/paraganglioma syndromes, adrenal cancer, and pituitary neoplasms. He is passionate about teaching and mentoring young physicians and has supervised 14 completed PhDs with six in progress. His work has been recognized by awards from NSW Cancer Institute (2013), Asia-Oceania Thyroid Association (2014) and the Endocrine Society of Australia Outstanding Clinical Practitioner Award (2021).

Keating, P

Patty is the Executive Director of the HypoPARAthyroidism Association, bringing together extensive leadership experience and a deep personal passion for patient advocacy. A post-surgical hypoPARA patient since 2015, she understands firsthand the challenges of living with a rare disease. Her journey with the Association began as a volunteer, followed by service on the Board and as Chairman beginning in 2022. In February 2024, she became Executive Director with a mission to grow the Association, reach more patients and clinicians, and amplify the voice of the hypoPARA community. Before entering nonprofit leadership, Patty spent more than 30 years in senior leadership roles in the beauty industry, overseeing operations for up to 400 salon locations. She was known for building high-performing teams, developing leaders, driving growth, and delivering results. Passionate about empowering others, Patty brings a people-first approach to everything she does. Outside of her professional work, she is a licensed real estate agent, has been married to Bill for more than 40 years, is the proud mom of Billy, and a grandmother. She enjoys spending time with family and friends, traveling, and Broadway shows.

Rayes, M

Healthcare professional. Patient advocate. Policy leader. Community builder. With over 20 years in healthcare — from laboratory services and phlebotomy to pharmacy compounding and nonprofit leadership — my career has been driven by one goal: improving patient lives. I currently serve as Associate Director of the HypoPARAthyroidism Association, where I lead advocacy, education, and public policy initiatives for the rare disease community. Alongside my nonprofit work, I am a Certified Pharmacy Technician and Compounding Technician, and an active member of the Texas Pharmacy Association’s Public Policy Council. I also volunteer with Patients Rising, the EveryLife Foundation for Rare Diseases, and the Chronic Disease Coalition to elevate patient voices and influence healthcare policy. I believe meaningful change happens when experience, empathy, and action come together — and I’m passionate about turning patient stories into policy solutions.

Love, N

Nicholas Love has lived with inherited autosomal dominant hypocalcaemia type 1 (ADH1) since early childhood. He is the inaugural chairman of CaSR Patient Support, Australia's premier patient organisation for people living with ADH1, hypoparathyroidism and related calcium disorders, and their families. A qualifed CPA with a Bachelor of Commerce and a Masters Degree in Accounting, Nicholas holds several company directorships and also runs his own Australian accounting and professional services business. He brings that sound commercial accumen and disciplined governance to the charity: sound governance, careful stewardship of every donated dollar, and the accountability that patients, funders and industry partners expect. For patients, he offers a voice shaped by living with the condition. For clinicians and researchers, he offers a well-governed partner, ready to support earlier diagnosis, better-matched treatment and patient involvement in research.