Foundation for Prader-Willi Blog | News

The Right Session for You: FPWR Conference 2019 Preview

Inspiration, hope, people who get it—That’s what the 2019 FPWR’s Family Conference is!

You don’t want to miss joining like-minded gamechangers with direct access to the people, knowledge, and inspiration you need to help your child. Hear the latest in PWS research from experts in the field and engage one-on-one with researchers who have a deep interest in finding treatments for our loved ones with PWS.

And remember, we have something for YOU because this conference is for YOU.

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A Ray of Hope: Families Share Why They Love the FPWR Conference

Attending a conference means being around people who get itthey understand the journey you have been on with your child, personally, and with the world. It’s like seeing your family when you attend the FPWR Family Conference. Everyone, whether a new parent or seasoned parent, are there to support one another and lift each other up. Don’t believe us? Then hear what attendees from our 2018 conference had to say:

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Top 10 Reasons to Attend This Year’s FPWR Family Conference

The FPWR Family Conference takes place October 3-5, 2019, in New Orleans, LA. Here are the top 10 reasons you need to register now and be here!

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FPWR 2019 Conference Speakers Announced

You won’t want to miss these speakers at the 2019 FPWR Family Conference this October in New Orleans, Louisiana.

Are you ready to join like-minded game-changers with direct access to the people, knowledge, and inspiration you need to help your child at the lowest price of the year?

Want to take home tangible ideas that you can work on with your child? 

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ConSynance Therapeutics, Harmony Biosciences Join PWS Clinical Trials Consortium

The Foundation for Prader-Willi Research is pleased to announce the addition of ConSynance Therapeutics and Harmony Biosciences to the PWS Clinical Trials Consortium.

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PATH for PWS Study Highlighted by National Organization for Rare Disorders

In celebrating five years of success with its comprehensive patient registry, the National Organization for Rare Disorders (NORD) has called special attention to FPWR’s PATH for PWS study.

The study stems from improvements made to the NORD registry that allow greater collaboration and engagement among stakeholders and experts to accelerate the pace of research for rare conditions.

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Meet Lisa Matesevac, FPWR's PATH for PWS Study Coordinator

FPWR is happy to announce that Lisa Matesevac has joined our team as our coordinator for the PATH for PWS Study, facilitating families’ involvement in the study. PATH for PWS will help us understand the medical complications that people with PWS experience, and what factors can decrease or increase their risk. 

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Enrollment is Now Open for the PATH for PWS Study

The Foundation for Prader-Willi Research (FPWR) and Zafgen are pleased to announce that enrollment is now open for PATH for PWS, a natural history study intended to better understand serious medical events in Prader-Willi syndrome (PWS) and evaluate how PWS-related behaviors change over time. The data from this study is intended to inform the development and clinical trial design of potential new treatments for PWS. Those interested in participating can find more information about the study and how to enroll at www.PATHforPWS.com.

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PWS Clinical Trial Consortium and FDA Hold Key Meeting This November

The PWS Clinical Trial Consortium has recently been granted the unique chance to have a Critical Path Innovation Meeting with representatives of the FDA. The meeting will take place in November in Silver Spring, Maryland. This is a unique opportunity for the consortium and the PWS community to engage in discussions with the FDA on the progress made in the last three years by the consortium to overcome clinical trial challenges in PWS.

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FPWR Conference Spotlight: You!

We’re in the home stretch before the 2018 FPWR Family Conference, and the only thing missing is you!

From Oct. 4-6 in Las Vegas, we’ll bring together families, caregivers, researchers and PWS experts for education, networking and community-building. We’re also excited to welcome parents of individuals with Schaaf-Yang once again and USP7 syndromes for the first time.

It’s a powerful experience, to be sure, and it wouldn’t be the same without all of you! Here are some highlights of what to expect.

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