This page is for parents who have children with PWS across NYS. It's a safe space for support, advocacy and hope.
PWANY is a volunteer driven, non-profit organization, and a chapter of The Prader-Willi Syndrome Association, USA (PWSAUSA). Our mission is Advocacy, Support and Hope for children with Prader-Willi Syndrome. We assist families in New York State with issues of educational advocacy, crisis support, as well as educational and medical referrals. We are available to parents across the state helping to
09/26/2025
https://www.pwsausa.org/event/cocktails-for-a-cause/
Cocktails for a Cause CLICK HERE TO PURCHASE TICKETS AND LEARN MORE Join us for an unforgettable evening of support, hope, and community. Hosted at the scenic and historic Brown’s Brewing Company Malt Room, this event will bring together
09/25/2025
https://www.instagram.com/pwa_ny/
https://tinyurl.com/Facebook-PWANY
www.prader-willi.org
09/08/2025
You are invited to join the National Organization for Rare Disorders (NORD) at the Bronx Zoo on Saturday, October 4, 2025, for a special day of fun, connection, and education! This event is FREE and is being hosted in partnership between NORD and our New York based Rare Disease Centers of Excellence.
Register here: https://t.congressweb.com/l/?DHLFYHKUUMEDMMK
A Rare Day at the Zoo
Date: Saturday, October 4, 2025
Time:10:00 a.m. to 1:00 p.m.
Location: Bronx Zoo, 2300 Southern Blvd., Bronx, NY 10460
Attendees will have the opportunity to meet other rare disease patients and families, network with companies and community-based organizations that are exhibiting, listen and learn from our speakers, and enjoy the zoo for free! Registration for this event is required, and capacity is limited. The event program will run from 10:00 a.m. to 1:00 p.m. and attendees can enjoy the zoo after the program concludes.
We hope to see you there. If you have any questions or are interested in exhibiting opportunities, reach out to Darby Gavin, Senior Community Engagement Manager at NORD. Darby can be reached via email at [email protected].
09/05/2025
05/07/2025
Even when its a Mini-Conference, the opportunity to come together is always an incredible experience! It felt like PWANY managed to pack so much into a few short hours: family networking, hearing about newly approved treatments and ongoing clinical trials, learning from specialists in their fields, and growing vision for advocacy. I am so grateful for the families and presenters that attended, our strong collaboration with PWSAUSA, and our amazing sponsors (Aardvark, Acadia, Harmony, Soleno, and Danielle Angiolillo). I also need to give a shout-out to PWANY's event planning committee, who is using the momentum from the Mini-Conference to start planning for a bigger event in the spring of 2026!
If you attended the Mini-Conference (or are thinking about attending next year's event), PWANY's event planning committee would love to hear from you! Please take a moment to share your thoughts on the following Google form- we welcome your feedback!!!
https://docs.google.com/forms/d/e/1FAIpQLSfW0OhCZcT2PYAYnjq7oSXvtvYrrh7UaqhRPOqPwqY3YZjWlg/viewform?usp=sharing
04/30/2025
Only a couple of days left before we start Prader-Willi Awareness Month by hosting NY's Mini-Conference! I am especially excited to share that not only will we be able to hear from representatives from Soleno (VYKAT), we will also be welcoming representatives of several ongoing clinical trials: Acadia (Carbetocin), Aardvark (ARD-101), and Harmony (TEMPO).
Online registration may be closed, but we still welcome attendees and actually have a few wristbands for Huck Finn's! Fees could be paid in person at the registration table Friday night or Saturday morning. Please email us at [email protected] with your name, number of adult attendees, if you have a loved one who will participate in the Activity Room, and requested number of wristbands for Huck Finn's. Unfortunately, the hotel block is sold out, but we could offer suggestions for other hotels in the area if needed. Hope to see you there!
04/22/2025
There’s still time to register for this important Q&A session about VYKAT tonight!
Join PWSA | USA and FPWR for a PWS Community Town Hall: Sharing Experiences with VYKAT XR
When: Tuesday, April 22, 2025 | 9:00 PM ET / 6:00 PM PT
Register: https://us02web.zoom.us/meeting/register/CrvkxauyScaGy7ZVWAVwcw #/registration
The PWS community is invited to a virtual town hall focused on VYKAT XR, the first FDA-approved medication for treating hyperphagia in individuals with Prader-Willi syndrome (PWS) ages 4 and older. This informal, community-led town hall is a no-host forum designed for families and caregivers to share their personal experiences with VYKAT XR, ask questions, and learn from one another.
Please note: This session is intended for peer-to-peer discussion. Medical advice will not be provided.
This town hall is intended for U.S.-based caregivers of individuals with Prader-Willi syndrome. PWSA | USA and FPWR will verify all registrants to confirm caregiver status to ensure a safe and supportive environment. Registration will only be approved once verification is complete.
For the privacy of our attendees, the town hall will not be recorded.
03/28/2025
Registration is NOW OPEN for Soleno Therapeutics & MedLive’s free, live webinar on April 16th at 9:15 AM PT / 12:15 PM ET!
Link: www.medlive.com/v/PWScommunity
We highly encourage everyone in the PWS community to attend this virtual event to learn more about VYKAT XR (formerly known as DCCR) and how it addresses hyperphagia in individuals with Prader-Willi syndrome. If you are unable to make it, the webinar will be recorded.
What You’ll Learn:
- How VYKAT XR helps manage hyperphagia as the first and only FDA-approved treatment
- A caregiver’s firsthand experience with VYKAT XR
- How to get started with treatment
Download the webinar flyer:https://www.pwsausa.org/wp-content/uploads/2025/03/Medlive-Soleno-Vykat-XR-Patient-CG-Live-Broadcast-Digital-Flyer.pdf