Engage Health Inc.

08/31/2026

A big thank you to our summer interns, Harper and Matthew!

We’re grateful for all the hard work, dedication, and contributions you brought to Engage Health® this summer. We truly appreciated having you both on the team!

Wishing you all the best as you head back to school!

08/25/2026

Rare disease patients are scattered across the globe. For over 25 years, Engage Health® has connected them with the researchers, advocacy groups and healthcare organizations working to reach them.

Learn more about Engage Health and our EnCompass® database today: https://www.engagehealth.com/encompass/

08/20/2026

Making a difference doesn’t require extraordinary resources. It starts with showing up, caring, and helping where you can.

Sometimes, a Rare Disease Difference Maker® is the teacher who goes the extra mile. The friend who steps in when a caregiver needs it most. The therapist who shows up every day. A sibling, parent, neighbor, or colleague who is there through all of the challenges.

That’s what the Rare Disease Difference Maker® project is here to recognize: real people making real-life differences. And the best part? Their ideas and actions are ones anyone can learn from and put into practice to create meaningful change.

We believe that you don’t need a title, a large following, or extraordinary resources to be a Rare Disease Difference Maker®. The program was created to recognize the people whose actions make a meaningful, lasting difference for those affected by rare disease.

Know someone who deserves to be recognized?

Nominate them and help us share their story 👉https://bit.ly/4bC6aBg

08/18/2026

At Engage Health®, we design research strategies rooted in the real-world experiences of patients, caregivers and healthcare professionals to generate meaningful evidence across rare disease communities.

Designed around your needs, our work spans burden of illness and access studies, health insurance literacy research, patient and caregiver experience studies, market research, publication support, and regulatory-grade evidence generation.

By capturing the perspectives that matter most, we help inform better decisions, strengthen evidence, and drive meaningful progress in rare disease.

Learn how the team at Engage Health® can support your next research initiative:
engagehealth.com | [email protected]

Explore our publication: Rare Disease Qualitative Research: Methodologies for Conceptual Strength and Representativeness

08/17/2026

Please join us in celebrating Heidi Edwards, our newest Rare Disease Difference Maker®!

Heidi’s story is a powerful example of how advocacy and determination can shine a light on the challenges of rare disease and the importance of genetic testing. We’re honored to recognize her impact and the meaningful change she continues to inspire.

Read it here: https://www.engagehealth.com/rare-disease-difference-maker/heidi-edwards/

08/13/2026

The right connections make all the difference.

At Engage Health, we know that reaching the right people in rare disease research isn’t always easy. That’s why we developed the EnCompass® database, to help connect research teams with the patients, caregivers, and healthcare professionals who make meaningful research possible.

We’re excited to continue strengthening these connections and helping our partners reach the communities that matter most.

Have a recruitment or research initiative coming up? Let’s connect and see how the EnCompass® database can help.

[email protected] | (651) 994-0510

08/11/2026

We’re proud to bring 25+ years of research experience, meaningful engagement, and actionable insights to the rare disease community. From understanding the unique needs of patients and caregivers to partnering with healthcare professionals and advocacy organizations, we’re committed to helping turn research into meaningful progress.

Let’s work together to turn insights into impact.

Have a research initiative on the horizon? We’d love to connect

[email protected] | (651) 994-0510

08/04/2026

A big thank you to National Organization for Rare Disorders, Inc. (NORD) for highlighting our upcoming Adult Cystinosis Webinar: Beyond the Kidneys!

We’re excited to collaborate with the cystinosis community and support Next Generation of Cystinosis as they host this important conversation on Thursday.

This Thursday, join Next Generation of Cystinosis for their Adult Cystinosis Webinar: Beyond the Kidneys—an important conversation exploring multisystemic impacts of nephropathic cystinosis in adults. RSVP: https://bit.ly/3T20w4X

This webinar will discuss the recently published article by Jeanine R. Jarnes, Rebekah S. Palmer, and Chester B. Whitley, highlighting the need for comprehensive, lifelong care beyond kidney health.

Whether you're an adult living with , a health care provider, researcher, or advocate, your perspective matters. We hope you'll join them for this informative discussion.

07/20/2026

ADULT CYSTINOSIS WEBINAR

"BEYOND THE KIDNEYS"

Who Should Attend?

This webinar is intended for adults living with cystinosis, healthcare providers, researchers, and anyone interested in advancing adult cystinosis care.

We hope you'll join us for this important conversation, and we look forward to seeing you there!




[ID: the graphic below uses the colors black and green to frame a white background. The following information is written on top of the white:

Adult Cystinosis Webinar: Beyond the Kidneys

Hosted by Next Generation of Cystinosis

Exploring the recently published article "Addressing the Multisystemic Impacts of Nephropathic Cystinosis in an Adult," by Jeanine R. Jarnes, Rebekah S. Palmer, and Chester B. Whitley.

To confirm your attendance complete our RSVP by scanning the QR code or entering the link:

https://bit.ly/3T20w4X


Webinar Details

Date: Thursday, August 6

Time: 4:00 PM CT

Location: Zoom

☆ Topics of Discussion ☆

• Transitioning from pediatric to adult care

• Gaps in adult cystinosis care

• Psychosocial experiences and quality of life

• Opportunities to improve long-term support and care

Please feel free to share this invitation with your colleagues, healthcare providers or others who may be interested! ]

07/10/2026

The Engage Health team presented findings from the CoRDs Research & Survey at the 4p- Support Group National Conference and Research Workshop, alongside members of the 4p- Medical Advisory Board, including Dr. Amy Calhoun, Dr. John Carey, Dr. Agatino Battaglia, Dr. Julian Nevado, and Dr. Karen Ho.

At Engage Health, we're proud to partner with nonprofits to provide high-quality patient and caregiver research that generates meaningful evidence, informs strategic priorities, and advances research and therapeutic development centered on the needs of the disease community.

Congratulations to the 4p- Support Group on a successful conference and thank you for the opportunity to support your community and contribute to this important work.