June 2023 Newsletter

Dear NNPDF Community,

It is hard to believe that our annual Family Support & Medical Conference is less than a month away. All of us at NNPDF are so excited to once again join together to celebrate our community and explore new ways to support all people impacted by all types of Niemann-Pick disease.

This year’s conference marks the 31st anniversary of our special event and we have been hard at work to make sure the agenda caters to everyone. One unique aspect of our conference is the opportunity to engage with leading experts in the field. Industry and medical leaders will share the latest advancements in current research, treatment, and care providing families with the opportunity to gain valuable insights and play an active role in shaping the future of Niemann-Pick disease management. Our keynote speaker, Dr. Klaus Romero, Chief Science Officer, Critical Path Institute (C-Path), will share his experience and offer insights into how leaders can make the drug development process more efficient for communities in critical need of access to treatment. Equally important, our agenda will also features break out sessions led by our Family Services team that can provide important resources for navigating emotional, financial, and physical challenges for caregivers, patients, siblings, and other family members. There will also be many fun activities for children and ample free time to socialize and connect with other families.

The annual Family Conference is also such a special time to help patients and families realize they are not alone. In rare disease communities, the ability to come together in person enables dynamic interactions and the sharing of insights and experiences that can be both emotional and meaningful in so many ways. While our community is strong, the geographical distance that separates us can make in-person connections difficult. For many families, the conference has been their first chance to connect with others who genuinely understand the daily challenges of living with Niemann-Pick disease. These meetings have been transformative for many patients and families, resulting in lifelong friendships and support networks.

We understand that some families may still have concerns about traveling and gathering in-person. We are taking all necessary precautions to ensure the safety and well-being of everyone who attends the meeting this year. For those who cannot attend in person, a virtual option is available.

The conference is just a few weeks away but there is still time to register! I hope you will all plan on joining us to celebrate our community and learn about the latest advances and the best ways to support all people impacted by Niemann-Pick disease. For more information and to register for the conference, please visit: www.nnpdfconf.org.

I look forward to seeing you all very soon!

Sincerely,
Joslyn Crowe
NNPDF Executive Director

Warm Regards,

Joslyn Crowe
NNPDF Executive Director