National Health Council

Register for the @NHCouncil 2026 Science of Patient Engagement Summit! “Turning Evidence into Impact” examines how engaging patients early and meaningfully strengthens health care. For more details, visit our website. bit.ly/4baxmac

Join us at #SPES2026! You will walk away with practical steps on how early and meaningful patient engagement strengthens health care. Sponsorship opportunities are available for orgs. looking to get involved and increase their visibility. Learn more: bit.ly/4baxmac

Registration is now open for the @NHCouncil's 2026 Science of Patient Engagement Summit: Turning Evidence into Impact! Join us May 11-12 as we explore how meaningful patient engagement leads to better health care. Register today: bit.ly/4baxmac

From our friends and WHIC allies at the National Health Council showing important encouragement about yesterday's historic action by @HHSGov and the @US_FDA.

#RareDiseaseWeek is a powerful reminder that patient voices drive progress. We are proud to stand with the 30M Americans living with a rare disease. The NHC is encouraged by @US_FDA draft guidance to accelerate individualized therapies and expand hope for families.

NEW: Read NORD's statement on the #FDA's draft guidance regarding the new "plausible mechanism" regulatory pathway for promising #RareDisease gene therapies: rarediseases.org/fda-plausible-… Why it matters: There are 10,000+ known rare diseases, about 80% of which are #genetic.

On Monday, the @US_FDA released more details about the Plausible Mechanism Framework. The Plausible Mechanism Framework is a set of recommendations to help those developing individualized therapies generate sufficient evidence that they are safe and effective, and that they can be manufactured appropriately. The EveryLife Foundation team will closely review the draft Guidance, alongside the Community Congress Regulatory Working Group in the coming weeks and together, we will continue to press for policy solutions that acknowledge the differences in how rare disease products must be developed and evaluated. Today’s release of the Plausible Mechanism Framework Draft Guidance was a meaningful step in that direction. To learn more about yesterday's event at the @HHSGov visit: everylifefoundation.org/fda-takes-impo…

☀️#HLC2026 is just around the corner! ☀️ NHC members, are you interested in connecting with peers from other prominent patient organizations and nonprofits? Join the @nhcouncil Feb. 10–12 for our 2026 Health Leadership Conference. Learn more: bit.ly/480WOhj

"Looking at vaccines, looking at prevention, it's really something you do for yourself, your family, and your community." In this video, CEO of @NHCouncil Randy Rutta explains that #RisksAreReal for vaccine-preventable illnesses. Learn more from experts: cveep.org/risksarereal

Kevin was diagnosed with obesity in his late 30s. After losing weight, he later regained it and struggled to find support—until a doctor finally listened & provided the treatment he needed. Access to the right health care isn’t optional, it can save lives. bit.ly/3XfyRMA

Karen lived with obesity her whole life and tried everything. Her health only improved when a provider treated obesity as a disease and provided effective care. Obesity is a chronic disease. Patients shouldn’t have to wait for treatment. bit.ly/3XfyRMA

At 32, Stephen was diagnosed with alcoholic cirrhosis. With support from family, recovery groups, and his Native community, he found healing. Liver disease affects mental health, families & communities Patients deserve equal support and access to care. bit.ly/3XfyRMA

Melaine lived with obesity for years and later developed Type 2 diabetes, MASH-related cirrhosis, and more. With the right care team, her health finally stabilized. She urges policymakers to prioritize fatty liver disease prevention and early care. bit.ly/3XfyRMA

Steve lives with diabetes and heart disease. A critically low heart rate led to a pacemaker, then a valve replacement. His story shows why patients with multiple chronic conditions rely on innovation and accessible care. Policy decisions matter! bit.ly/3XfyRMA

Liz has lived with obesity her entire life. She felt blamed instead of supported—until she learned obesity is a disease that requires care, not judgment. She’s urging policymakers to ensure access to obesity treatment so patients can live healthier lives. bit.ly/3XfyRMA

In a new post on @PhRMA’s blog, our own Michael Petroutsas highlights how the #Medicare Prescription Payment Plan can help some seniors better manage their expenses and adhere to their prescribed treatments. phrma.org/blog/guest-blo…

Sandeep’s health changed after joining the South Asian Heart Program. Rooted in MEDS (Meditate, Exercise, Diet, Sleep), it helped him stay consistent and manage Type 2 diabetes. Programs like this should be accessible nationwide — they transform health. bit.ly/3XfyRMA

Aleka’s journey to manage obesity has been long & filled with barriers—but she stays strong for herself and her family. She’s grateful for insurance that helps her access care but knows many don’t have that support. Equitable care is essential. bit.ly/3XfyRMA

Jess has lived with obesity since age 6 and faced stigma instead of care. Delayed treatment keeps patients in survival mode instead of living fully. Jess is calling on policymakers to expand access to obesity care and end stigma in the health care system. bit.ly/3XfyRMA

Behind many patients is a caregiver like Ana. She supports her husband with Type 2 diabetes and three sons with unique health needs. Caregivers need more than recognition — they need support, resources, and policies that help families thrive. bit.ly/3XfyRMA