From the desk of J. D. Faccinetti, co-founder – We are big fans; collaboration works. Our experience and research suggest that when collaboration between organizations is strong, learning improves, and outcomes are more effective. When we create, promote, and amplify the initiatives that result in collaboratively addressing and solving the issues facing patients and patient advocacy groups, things seem to happen faster. And that, in it of itself, it’s a huge accomplishment. In a recent PWN article, we wrote:
On a grand scale, collaborative work leads to simple but powerful outcomes like more resources for people who need them. Other outcomes include common goals that result in better, more effective, and on-target work. For example, more people have access to essential and helpful information, more people are connected and exchange information, more good science-based educational and informational tools become available, and critically, the chances that the problems that continually affect patients can be solved quickly and efficiently increase exponentially. With collaborative approaches, problems can be better understood, defined, and ranked in terms of their importance and ability to affect meaningful change. It’s like a symphony orchestra with talented musicians and fine-tuned instruments, all doing their part and playing from the same sheet of music. That’s the only way beautiful music happens!
Engagement and collaborations to support the endocrine rare community was the theme for this year’s patient advocacy group discussions sponsored by Ascendis Pharma and held at the yearly ENDO conference in Chicago. Two principal panelists, Patty Keating, Chairwoman for the HypoPARAthyroidism Association (HPA), and Michael Barnes, JD, counsel to Aimed Alliance, shared their organization’s respective missions and the challenges they face in supporting and advancing the care of patients with endocrine rare diseases. HPA’s vision is a world without hyperparathyroidism, and its mission is to impact people with hypoparathyroidism through education, advocacy, and research. The Aimed Alliance is a nonprofit health policy organization that aims to protect the rights of healthcare consumers and providers. Since Aimed Alliance was founded a decade ago, it has primarily focused on changing government policy. However, the organization’s leadership recognized that the government could not be relied on to act or to act quickly. Now, the organization strives to educate patients, providers, and decision-makers, such as human resources professionals. Aimed Alliance also engages a variety of constituencies to stay up to date and activate advocates when needed. HPA continues to have a strong connection with its patients. However, the organization’s leadership has realized that they need to expand and grow to help more of the 100,000 patients in the US who have hypoparathyroidism because their membership is currently 5,000.
Participating organizations’ representatives discussed their missions and critical issues for 2023/24, and next steps and plans are being discussed to increase potential initiatives. Stay tuned for a podcast where we’ll discuss more details on these initiatives coming up soon.
Participating in the discussions: Michael Barnes, Aimed Alliance (panelist); Elizabeth Lepkowski, AACE; Matthew Drake, ASBMR; Rubin Dhaliwal, Endocrine Alliance; Harmeet Narula, Endocrine Alliance; Christine Yedinak, ENS; Debra Greenspan, ENS; Amna Naser, ENDO; Rachel Kelley, ENDO; Helen Gregson, ESE; Sebastian Neggers, ESE; Mehul Dattani, ESPE; Michele Rayes, HPA; Patty Keating, HPA (panelist); Courtney Reints, PENS; Isabel Couto, PENS; Laurie Cohen, PES; Jorge Faccinetti, PWN; Leslie Edwin, WAPO
Organizations: AACE, American Association of Clinical Endocrinology; ALPE, Fundación ALPE Acondroplasia; APS, Autoimmune Polyglandular Syndrome; ASBMR, The American Society for Bone and Mineral Research; CDC, Chronic Disease Coalition; ENDO, Endocrine Society; ENS, Endocrine Nurses Society; ESE, European Society of Endocrinology; ESPE, European Society for Paediatric Endocrinology; EveryLife, EveryLife Foundation for Rare Diseases; HGF, Human Growth Foundation; HPA, HypoPARAthyroidism Association; ICOSEP, International Coalition of Organizations Supporting Endocrine Patients; NORD, National Organization for Rare Disorders; PENS, Pediatric Endocrinology Nursing Society; PES, Pediatric Endocrine Society; PNA, Pituitary Network Association; PWN, Pituitary World News; RBDA, Rare Bone Disease Alliance; WAPO, World Alliance of Pituitary Organizations.
Our thanks to Ascendis’ John Caminis, Neha Gandhi, and Subhara Raveendran for putting this group together.
Photo by Larisa Birta on Unsplash
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