United In Hope: International Prader-Willi Syndrome Conference

The United In Hope: International Prader-Willi Syndrome Conference will be held at the Arizona Grand Resort and Spa, Phoenix, Arizona, USA, from 24-28 June 2025.
The event will be hosted by the Prader-Willi Syndrome Association | USA (PWSA | USA), the Foundation for Prader-Willi Research (FPWR) and the International Prader-Willi Syndrome Organisation (IPWSO).
Our theme, “United in Hope” reflects this unique collaboration, which we anticipate will serve as a catalyst for the largest international PWS conference ever held.
Click the button below to register for the 2025 International PWS Conference. We hope to see you there!
Please note: Several of our programs are now at capacity. Please scroll below to see what is still open for registration.
Family Program at Capacity - Registration Now Closed
If you haven’t yet registered for the Clinical & Scientific or Professional Providers programs and would like to attend, we encourage you to sign up soon while space is still available.
2025 Conference Schedules
High-Level Family Program Schedule Now Available for Download
Exciting news! A high-level look at the 2025 International PWS Conference Family Program schedule is now available for download. Join us on Friday, June 27, and Saturday, June 28, 2025, for an incredible lineup of expert-led sessions covering key topics, including:
- – What’s Happening in PWS Research
- – Aging: Cognitive, Physical & Social Health
- – Starting Out Right: Behavioral Strategies for the Early Years & Beyond
- – Clinical Trial Panel
- – Finding Joy Amidst Grief
- – Sleep Disorders in PWS
- – Caring for the Caregiver
- – Mental Health Challenges in People with PWS
- – Trailblazers: Stories of Inspiration from Leaders in Our Community
…and so much more!
Each session is designed to focus on specific age groups of those living with PWS, and parents and caregivers are encouraged to attend sessions based on their loved one’s age. While we’re still fine-tuning details, we can’t wait to welcome families from around the world for this incredible opportunity to connect, learn, and grow. A finalized agenda with our speakers will be released closer to the conference.
High-Level Professional Providers Program Schedule Now Available for Download
We also have a high-level look at the 2025 International PWS Conference Professional Providers schedule, which is now available for download at the button below. Professional Providers are invited to join PWSA | USA, FPWR, and IPWSO on Wednesday, June 25, and Thursday, June 26, 2025, for an incredible lineup of expert-led sessions covering key topics, including:
- – PWS Residential Services Across the Globe
- – The Development of a PWS Specific Respite Service
- – Looking Beyond Poor Lean Mass and Growth Hormone Deficiency, Why is Exercise More Difficult for People with PWS?
– …and so much more!
Each session and workshop is designed to support Professional Providers in the PWS space, and offer opportunities to connect, learn, and grow. A finalized agenda with our speakers will be released closer to the conference.
High-Level Clinical & Scientific Program Schedule Now Available for Download
Our high-level look at the 2025 International PWS Conference Clinical & Scientific schedule is now available for download at the button below. Join scientists, researchers, and medical professionals for a two-day event highlighting the latest findings in Prader-Willi syndrome research and clinical care. Topics will include:
- – Genetics & Epigenetics
- – Medical
- – Oral/Poster Lightning Talks
- – Clinical Care
– …and so much more! - Each session and workshop is designed to deepen the understanding of Prader-Willi syndrome from a medical, clinical, and scientific perspective, while also offering opportunities to connect, learn, and network. A finalized agenda with our speakers will be released closer to the conference.
Important Announcements for Conference Attendees
The United in Hope 2025 PWS Conference Family Program schedule is live! To help us plan effectively, please let us know which sessions you’re most interested in attending.
This isn’t an RSVP, just a quick way for us to gauge excitement and prepare accordingly. It only takes about 2 minutes.
Please choose one session you’re most interested in from each time slot in our feedback survey at the button below. Thanks for helping us make this conference impactful!
BIPOC PWS Community: You're Invited to Connect Before the Conference – May 18
Please join the BIPOC PWS Affinity Group for a Virtual PRE-CONFERENCE DISCUSSION | MAY 18th, 2025 at 6PM EDT/ 3PM EDT
If you are a person of color diagnosed with PWS, or care for a person of color with PWS, come out to learn about the 2025 United in Hope conference topics, get some conference lessons learned, or share your questions with attendees to ask on your behalf. Whether this is your first conference, your fifth conference, or you are unable to attend this year. This will be a great opportunity you don’t want to miss.
Email BIPOCPWS@gmail.com to RSVP, and you will get the ZOOM link via email by 16 MAY.
Mission: Our mission is to empower, connect and support caregivers and individuals with Prader-Willi Syndrome who are Black, Indigenous and People of Color through community-driven research, education, and advocacy. By uniting and uplifting diverse voices and experiences, we aim to improve health outcomes and the overall quality of life for all.
Vision: We envision a future where our loved ones regardless of their skin color, their financial status or/and their background live limitless lives. We aim to build understanding and empathy for people living with PWS by creating supportive and inclusive communities. We see a future where people of all shades are able to live their best healthy lives.
COMBINEDBrain Sample Collection at Conference – $50 Gift Card for Participants
FPWR has partnered with COMBINEDBrain to collect blood and urine samples at the United in Hope PWS Conference.
These samples will be added to our SYS and PWS biorepositories for use in future research projects. A $50 gift card will be provided to each person with PWS or SYS who gives a sample! A genetic report or doctor’s note confirming PWS or SYS diagnosis must be provided.
Individuals who have given a sample in the past can give a sample again. Participants must register in advance. If interested, please contact Lisa Matesevac at lisa.matesevac@fpwr.org.
2025 Conference Hotel | Arizona Grand Resort & Spa
Important 2025 Conference Resort Update: On-site hotel rooms are almost gone! Act fast if you plan to stay at the Arizona Grand Resort & Spa. There are only a few rooms left throughout the week, and once they’re gone, we can’t add more (Thursday, June 26, 2025 – rooms are completely sold out). Secure your spot now to stay right where the action is. Nestled at the base of America’s largest urban park and wilderness preserve, Arizona’s only AAA Four Diamond all-suite resort features spacious one and two-bedroom suites. Whether meeting with colleagues or vacationing with friends, gracious service, creative culinary delights and unique recreational activities await.
The residential-style look of all 744 guest suites at the Arizona Grand Resort & Spa provides resort guests with a true “home away from home” experience.
Need alternative accommodations?
We now have a hotel locator website created specifically for conference attendees! Browse nearby lodging options by clicking the button below and choose what works best for you. Just remember – if you stay off-site, you’ll need to arrange transportation to and from the Arizona Grand Resort & Spa for all conference sessions.