Kristi Rickenbach

[Kristi Rickenbach @kcole0925]

@CharlieK_news Thank you Elon!!🇺🇸

[Kristi Rickenbach @kcole0925]

@ElonMuskAOC Beautiful! I would love one.

[Kristi Rickenbach @kcole0925]

@ElonMuskAOC YES!

[SolenoTx @SolenoTx]

Hyperphagia, a primary feature of #PWS, is relentless hunger that impacts the whole family. Parents secure food, while siblings adjust to strict routines. The stress is constant. Understanding hyperphagia is essential for supporting those with PWS. Learn more: https://t.co/zoaVPcTBZH

#RareDisease #Support4PWS

[Kristi Rickenbach @kcole0925]

I am so proud of my daughter, Justice. She is an example of what it means to live with Prader-Willi syndrome and not be defined or limited by it. https://t.co/rDAdMPWpdY

[SolenoTx @SolenoTx]

Recognizing that #PraderWilliSyndrome can manifest in many ways, Charles and Gennelle continuously choose to move forward with unwavering hope as they support their daughter on her unique #PWS journey. Learn more https://t.co/KrZpBT9CTX

#Support4PWS #MyPWSstory

[SolenoTx @SolenoTx]

The #PraderWilliSyndrome community is made up of diverse individuals, each with their own dreams, interests, and talents to share. During #PWSAwarenessMonth, raise awareness and share messages of hope for this amazing group of people. https://t.co/fNAzyCe0A6

[Kristi Rickenbach @kcole0925]

https://t.co/se3XyQ9fBs

[PWSA | USA @PWSAUSA]

Exciting News! Soleno Therapeutics has announced positive results from the randomized withdrawal phase of Study C602 for PWS with DCCR. This is a significant step towards delivering an effective therapy for PWS individuals.

Find more details: https://t.co/4ewLlwK9Fx.

[PWSA | USA @PWSAUSA]

YOU have the opportunity to have your voice heard by several FDA representatives at the Externally-Led Patient-Focused Drug Development (EL-PFDD) meeting, June 22nd from 12:00 - 4:30 p.m. EST, both in-person and virtually. Learn more at https://t.co/iZPwS5XJKL.

[IPWSO @ipwso]

We are delighted to announce that our international conference 2025 will be held in the USA in partnership with @PWSAUSA. We are very much looking forward to working with PWSA | USA to deliver an outstanding #PraderWilliSyndrome conference, we hope to see you there!

[IPWSO @ipwso]

The latest comprehensive update to the GeneReviews article on #PraderWilliSyndrome by Driscoll, Miller and Cassidy is now online at https://t.co/XnhBz1vl30 with all the key information on #Diagnosis and #ClinicalCharacteristics

[Kristi Rickenbach @kcole0925]

Spending the day with my “rare beauty” at
Rare Disease Day at the NIH
#TrendIsRare

[Kristi Rickenbach @kcole0925]

Your voice matters, come and share your story how Prader-Willi syndrome has affected you and your child living with the challenges of PWS. #raredisease

[PWSA | USA @PWSAUSA]

We have the incredible opportunity to bring together the PWS patient voice at PWSA | USA's 37th National Convention during the FDA Externally-Led Patient-Focused Drug Development Meeting (EL-PFDD). What is the EL-PFDD and how can YOU attend? Find out at https://t.co/0BZZS0RyJ6.

[Kristi Rickenbach @kcole0925]

@Johnny_Joey 🤣☠️🤣

[Effie Parks @OnceUponAGene]

ATTENTION, 📢 probably the biggest #RareDisease exposure op ever! For the entire month of FEB the portraits of @BeyondtheDx will be on the Jumbotron in Times 🟪
New Yorkers: Snag & Tag! 📸
I need ALL the selfies!!! #CTNNB1 #RareDiseaseDay
You da best @H4BBoston !!!

[Kristi Rickenbach @kcole0925]

@ElijahSchaffer Harlow has Prader-Willi syndrome which causes an insatiable appetite, low muscle tone, developmental and cognitive delays. People with PWS feel like they are starving all the time. What we need is a medication to help those with this devastating syndrome
https://t.co/1OCsUnQYiT

[Effie Parks @OnceUponAGene]

ATTENTION, 📢 probably the biggest #RareDisease exposure op ever! For the entire month of FEB the portraits of @BeyondtheDx will be on the Jumbotron in Time🟪
New Yorkers:
I need ALL the selfies!!! #CTNNB1 #RareDiseaseDay

[Tim Tebow @TimTebow]

Please join me in prayer for Damar Hamlin 🙏

[PWSA | USA @PWSAUSA]

ATTENTION PWS COMMUNITY: Registration is NOW OPEN for PWSA | USA’s 37th National Convention!

Join us June 21 – 24, 2023, in Orlando, FL at the Hilton Orlando Buena Vista Palace. Register and find all the details about this world-class event at https://t.co/rrc9AWCGsE.