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Neutropenia Family Retreat

What is the Retreat/Conference?

Since 1994, our Neutropenia community has been gathering during the summers for our Family Retreat. We may be small as a rare disease, but together we are one big family! 

Our goal with each retreat is to help equip attendees with the skills, knowledge and support you need to manage life with Neutropenia.  We are often asked if this weekend is just for families and we are happy to say this weekend is not only for families but also for adults with chronic neutropenia. There will be presentations and breakout sessions designed for each group attending. These in-person retreats have proven to be invaluable, leaving a lasting impression on the lives of individuals with chronic Neutropenia and their families. 

What to Expect

  • The opportunity to connect with other individuals/families who are dealing with chronic Neutropenia.
  • Presentations from Neutropenia experts and professionals with topics covering chronic Neutropenia in general, management, up to date research findings and ongoing clinical studies.
  • Breakout sessions to address the different types of chronic Neutropenia and specific topics; testimony to personal stories of those living with Neutropenia; and more!
  • Kids Camp for all kids in attendance ages 4-16 brought to you by The Ella Jewell Foundation and coordinated by professional event planner Kristin McGuinness, her Sparklicious staff, and volunteers.  Kids Camp will be in session Friday afternoon and all day Saturday during the presentations and break out sessions for adults (kids will join parents for all meals).  We are excited for the kids to get to know each other and enjoy all the fun activities that Kristin and her staff have planned for the weekend!
  • Shot parties! Demonstrate your shot technique and learn what works for others.
  • A fun, relaxed weekend creating positive memories and developing a support network to help you along your journey.

Event Information

  • Retreat weekend will be held at the Graduate Hotel, Cincinnati, Ohio beginning on Friday, July 11th at 1:00 with orientation and ending Sunday, July 13th at noon, after the final session.
  • Check in for the retreat begins Friday, July 11th at 11 am.
  • Hotel reservations are booked separate from the Retreat registration and must also be booked by June 9th for group discount pricing. Hotel prices did not increase since our last retreat in 2023!

Registration – Now Closed. We look forward to meeting everyone July 11!


Financial Assistance

Thanks to X4 Pharmaceuticals, we were able to provide financial assistance to all who applied as well as offset some of the cost of the retreat for all.

Thank you X4 for your continued partnership and support of our retreat.


Testimonial

Patient Stories & Experiences

“My first NNN conference was 2018. I spent years before that almost in denial of my condition, feeling very lonely. I always thought the NNN conference was just for families with children not adults with neutropenia. As I grew older I felt I needed to have more of a connection to neutropenia and wanted to meet others with it and doctors that actually KNEW about what I had! That’s exactly what I got!

- Vanessa

“Having a rare disease has been a challenging and rewarding experience that has giving me the opportunity to meet some amazing people. It has taught me to never stop learning! I have an amazing team of doctors that have worked hard to help me life the safest best life possible.”

- Jacqueline

“My first NNN conference was 2018. I spent years before that almost in denial of my condition, feeling very lonely. I always thought the NNN conference was just for families with children not adults with neutropenia. As I grew older I felt I needed to have more of a connection to neutropenia and wanted to meet others with it and doctors that actually KNEW about what I had! That’s exactly what I got!

- Vanessa

“Having a rare disease has been a challenging and rewarding experience that has giving me the opportunity to meet some amazing people. It has taught me to never stop learning! I have an amazing team of doctors that have worked hard to help me life the safest best life possible.”

- Jacqueline

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