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Research Blog

Friendships in PWS: Data from the Global PWS Registry

Most people with PWS are social and enjoy spending time with family and friends. However, making and keeping friends can be difficult for people with PWS. Because of food issues, people with PWS often need supervision and monitoring, which can make it difficult for them to participate in many social and leisure activities, so many of which commonly include food. Additionally, because of emotional dysregulation, people with PWS can become more easily upset over changes in schedules and expectations. These factors can make developing and maintaining friendships challenging.

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.

PWS Clinical Trial Webinar: Diazoxide Choline Controlled Release (DCCR)

Is Oxytocin for PWS Beneficial? An Overview of Research

Researchers are making progress in evaluating the potential therapeutic benefit of oxytocin for PWS. Here, we review some of the most prominent research studies in this area and their implications for PWS.

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:

Vanderbilt Clinic Founder Reflects on Filling the Gaps In PWS Care

This guest blog was contributed by Dr...

Saniona Provides Update on Ongoing Phase 2a Study of Tesomet for PWS

Saniona recently published a press release with an update on their Phase 2a study of Tesomet for Prader-Willi syndrome. A member of the PWS Clinical Trials Consortium, Saniona is working with FPWR, PWSA-USA, leading PWS experts and other industry partners to identify and improve primary, secondary, and tertiary endpoints for PWS Clinical Trials. Saniona’s current Phase 2 study is being conducted in Europe and if successful, will be brought to the US...

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!

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? 

Two Silver Medals: A Child's Achievement Inspires Strength and Hope

A special contribution by guest blogger Allison Shelton

Allison shared her story via our Stories of Hope questionnaire.