Minnesota Prader-Willi Syndrome Association

06/19/2026

This is especially important to the PWS community as we work with industry partners to find more solutions for the most challenging aspects of PWS!

Do you have questions about how to participate in clinical trials as a rare disease patient or caregiver? Join our webinar tomorrow at 2 p.m. ET for answers.

RSVP now and submit your clinical trial questions: https://bit.ly/42U9OS6

Sponsored by Alexion Pharmaceuticals

06/19/2026

Who's ready for the sequel?! Registration is OPEN for our second year of Camp Monarch, a camp for adults with PWS! It's only a few months away! See you there!

06/09/2026

On the heels of hearing from Maria Picone and Ann Adee from Harmony in person at our Annual Community Meeting, we encourage you to attend this informative webinar. Even if you are not sure that your child with PWS has disordered sleep, even if you are not sure about joining a clinical trial - this is worth a listen. The more we know, the more we can do to help our community.

When cataplexy occurs in individuals living with Prader-Willi syndrome (PWS), it can be confusing, concerning, and difficult to recognize.

Join us for Shedding Light on PWS and Sleep: Understanding Cataplexy, a conversation bringing together caregivers, individuals with lived experience, and clinicians to explore the realities of cataplexy in PWS. We'll discuss how symptoms may present, the relationship between cataplexy and sleep disorders, and what families have learned along the way.

🗓️ Wednesday, June 17, 2026
⏰ 2:00–3:30pm ET/1:00-2:30pm CT/12n-1:30pm MT/11:00am-12:30 PT

More than a webinar, this is an opportunity to learn from both experts and the community, ask questions, and connect with others navigating similar experiences.

RSVP here: https://www.eventcreate.com/e/cataplexy-pws-webinar

05/31/2026

Maria from Trend and Amy Adee from Harmony Biosciences will be at our Annual Community Meeting SATURDAY! Come to hear from them directly and ask your questions about EDS (excessive day time sleepiness), Harmony’s clinical trial, and PWS Connect, Trend’s really cool study! They are AMAZING!

05/26/2026

Our annual community meeting is JUNE 6th! RSVP here:
https://forms.gle/mviUZoYJ4MVHNM528

05/19/2026

Looks like another great event from Colors of Hope!

When: Thursday, May 28th at 8 PM ET | 5 PM PT.
Where: ZOOM

Families of color face unique hurdles, as well as some familiar obstacles, while advocating for their PWS loved ones. Come hear from two veteran advocates about effective ways to advocate for your loved ones in medical and school settings. Our speakers are Lakeia Nard, Founder and CEO of Melanin Children Matter and Tierra Emerson, a Licensed Master Social Worker with over 12 years of experience in working in the mental health field and a parent coach.

To attend this webinar, please RSVP to [email protected].

05/02/2026

People living with PWS may experience excessive daytime sleepiness (EDS). TEMPO, a study being conducted by Harmony Biosciences, is a PWS study assessing an investigational medication for EDS. It’s being conducted at centers across the US, including a fully virtual site that conducts all study visits at home.

Potentially qualified participants:

o are 6 years of age or older
o have a diagnosis of Prader-Willi syndrome
o have excessive daytime sleepiness
The Leapcure team is supporting the TEMPO study by helping families determine whether they may be eligible to participate and offering 1-on-1 support to answer questions. Connect with a dedicated Leapcure team member and learn more by starting with this quick questionnaire: https://lpcur.com/pws-mn-tempo

05/02/2026

RSVP for our Fall Fun Day in September!
https://forms.gle/T5hnz9GB3WrvRoyn7

05/02/2026

JOIN THIS EVENT IN PERSON OR VIRTUAL THIS THURSDAY!

We are sharing an exciting event on behalf of the MN Rare Disease Advisory Council. The MN RDAC is hosting a watch party for the 16th annual CoRDS Great Plains Rare Disease Summit. This event brings together researchers, clinicians, and advocates to discuss the latest in rare disease research and community support opportunities. RSVP today!

Event details:
What: MN Rare Disease Council Great Plains Rare Disease Summit Watch Party
When: Thursday, May 7, from 3:00-5:30 and Friday, May 8, from 8:30-5:00
Where: Spruce Tree Center, 1600 University Ave, St Paul
RSVP is required

What’s on the agenda?
On Thursday, it’s community day. RDAC will start the livestream at 3:00 and will listen in to MN RDAC Executive Director Erica Barnes speak at 4:00. RDAC will offer refreshments, livestream the conference on a big screen, and provide a chance to connect with other members of the Minnesota rare disease community.
Friday will feature the all-day scientific symposium. Stop by when you can to hear the latest from researchers and clinicians who are leading experts in the rare disease space. This year’s special topic is rare diseases of the skeletal system and craniofacial development, but all are welcome! Please RSVP at https://forms.microsoft.com/g/nHG5TuLSpt and send any questions to [email protected].

I hope you’ll join this fun opportunity to engage, learn, and connect with MN RDAC and the broader scientific, advocacy, and patient communities.