New ‘Everyday Advocacy’ initiative supports Cushing’s syndrome care

Crinetics Pharmaceuticals, along with several patient groups, has launched the Everyday Advocacy initiative to help people with Cushing’s syndrome and other endocrine, or hormone-related, conditions better understand their diseases and take an active role in their care.

Developed with input from several advocacy partners — including the Cushing’s Support & Research Foundation — and patient leadership councils representing a number of endocrine conditions, the initiative aims to help people with these diseases navigate complex care pathways, recognize symptoms earlier, and feel more confident engaging with healthcare providers.

It focuses on providing education, practical tools, workshops, and digital resources to strengthen communication between patients and healthcare teams. Four live workshops focused on education and practical tools for people with acromegaly, a condition driven by the excessive production of growth hormone, will be held this year, with additional workshops expanding the program to other endocrine conditions starting next year.

“Crinetics is led by a conviction that meaningful progress for endocrine disease treatment begins with listening to patients and understanding their unique lived experiences,” Jacqueline Kirby, Crinetics’ chief corporate affairs officer, said in a company press release outlining the program’s goals.

“Everyday Advocacy builds on the long-standing relationships we’ve built with patient communities in underserved areas of endocrinology and will offer educational resources and opportunities that support informed, confident participation in care,” Kirby said.

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The initiative provides a series of resources, including tips for talking to healthcare providers and suggestions for questions to ask a care team, alongside clinical guidelines for treating endocrine conditions.

Advocacy initiative offers doctor-finding tool for Cushing’s patients

For people with Cushing’s syndrome, a group of endocrine conditions driven by excessive levels of the hormone cortisol, there is a doctor-finding tool for Cushing’s disease, a form of Cushing’s caused by tumors forming in the brain’s pituitary gland. There are also several resources for pituitary conditions, including an educational video series.

There are also resources to help patients navigate health insurance, including organizing care and insurance documents, understanding healthcare coverage, and choosing the right care plan. Information on a financial assistance program for people with Cushing’s is also available.

Everyday Advocacy meets patients where they are, with practical tools, meaningful community support, and resources designed to help patients navigate the challenges they face every day.

Other tools from several advocacy organizations, including mental health support resources and specific information on how to find specific patient advocacy organizations or support groups across multiple endocrine conditions, can also be found on the initiative’s website.

Additionally, the platform contains videos of real-life stories of people with endocrine diseases who share their experiences of living with these conditions, their journey toward diagnosis, and the psychological impact of their disease.

“Everyday Advocacy meets patients where they are, with practical tools, meaningful community support, and resources designed to help patients navigate the challenges they face every day,” said Jill Sisco, president of the Acromegaly Community, a Massachusetts-based nonprofit.

Dina Matos, executive director of the CARES Foundation, focused on aiding those with congenital adrenal hyperplasia, praised the initiative for “giving patients the tools and confidence to engage with their healthcare teams as true partners,” shifting away from the dynamic of becoming their own care experts while navigating a complex condition.