National Neutropenia Network

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National Neutropenia Network

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Founded in 1994, the NNN is a support organization for families and patients.

The National Neutropenia Network promotes awareness, educates, and provides a support system for patients with neutropenia and their families through a national support system.

10/14/2026

Clinical research plays an important role in the future of rare disease care. We are excited to partner with Leapcure to provide an informational webinar about clincial studies, the impact of participation, and information about current studies.

Leapcure is a study support team that works with potential study participants, caregivers, and research teams to help make clinical trials more accessible. As part of their support for the 4WARD study, the team is available to answer questions, explain what to expect, and help connect potentially eligible, interested individuals with a nearby research site.

Whether you're exploring research opportunities or simply want to learn more, this conversation is for you!

📅 October 29, 2026 | 🕒 7:00 pm ET
🔗 Register at https://forms.cloud.microsoft/r/Gehdtr21tJ

A meeting invite will be sent registrants prior to the meeting.

Please share with others in the neutropenia community!

10/08/2026

Things we wish doctors knew about neutropenia, part 1. Swipe through, then share this with your care team.

Need support? Our volunteers have been there. Find community at https://neutropenianet.org.

09/04/2026

It has been brought to our attention that there may be a change in the pharmacy handling prescriptions for individuals receiving Neupogen through the Amgen Neupogen Registry for Severe Chronic Neutropenia.

We understand that, as of August 31, Knipper RX is no longer handling these prescriptions. Individuals who need a refill are encouraged to contact TheraCom Pharmacy at 877-654-7810, option 4, when it is time to request their next refill.

Please note: The National Neutropenia Network has not received an official communication from Amgen confirming this change. We are sharing this information to help members of our community know where to direct questions and refill requests while additional information is clarified. If you have difficulty obtaining your medication or receive different information, please let us know so we can help connect you with the appropriate resources.

08/12/2026

Are you receiving the National Neutropenia Network newsletter? 📩

Our newsletter is a great way to stay connected with the neutropenia community and receive updates on resources, research, upcoming events, and ways to get involved.

Not on the list yet? Sign up today and stay in the loop! https://forms.cloud.microsoft/r/SN9CJEb35g

07/22/2026

🌟 Save the Date! 🌟

The National Neutropenia Network Family Retreat is returning!

📅 July 16-18, 2027
📍 Cincinnati, Ohio

This retreat is for everyone - adults or children living with chronic neutropenia and parents or spouses or loved ones caring for someone with neutropenia.

It's a weekend to learn from leading experts, connect, share experiences, and create lasting memories with people who truly understand.

Stay tuned for registration details—we hope to see you there! https://neutropenianet.org/event/neutropenia-family-retreat/

03/30/2026

Upcoming Opportunities for Our Neutropenia Community ✨

We have two ways to get involved - whether you’re looking to learn or help shape what’s next:

🔬 4WARD Study Webinar

Join us THIS WEDNESDAY April 1 for a virtual session on a Phase 3 clinical trial exploring a potential new treatment option for chronic neutropenia. Hear the latest updates, learn about eligibility, and ask questions live.

🗓 April 1 | ⏰ 7 PM ET
📌 Register by March 31 to receive Zoom link: https://bit.ly/4m62nAa

💡 2027 Family Retreat – Planning Committee
We’re starting to plan our next retreat and want your ideas, energy, and voice at the table. Help us create a meaningful experience for families across our community.

📩 Interested? Email [email protected]

03/09/2026

The 4WARD Study is still enrolling so don't miss the upcoming information session!

If you are age 12 or older and living with chronic neutropenia, you may be eligible to participate in the 4WARD Study.

Learn more about the study on their website and join us on April 1 at 7 PM ET for a virtual informational session where X4 Pharmaceuticals will explain the study and answer your questions live.

This is a great opportunity to learn more and see if participation might be right for you or someone you know.
📅 April 1 | 7 PM ET
💻 Virtual Info Session + Q&A
Register now: https://forms.office.com/r/mwtNASCE0Y

Learn more at: https://4WARDstudy.com

02/28/2026

Today, on Rare Disease Day, we stand with the more than 300 million people worldwide living with a rare disease — including those affected by chronic neutropenia.

To our neutropenia community: You are not alone. 💜

We remain committed to working toward a future where no one faces neutropenia without answers, resources, and hope.

Learn more and find support: https://neutropenianet.org

Address

Cincinnati, OH

Telephone

+18666000799

Website

http://www.neutropenianet.org/

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