Malia Jusczyk Glen Jusczyk カフェオレ星人🦑 To the bravest superhero of all time!

Friday is Klippel-Feil Syndrome Awareness day. KFS constantly affects my body in ways I never could have imagined. My choice is to do what I can, even though it hurts tremendously & I struggle. I use my body as hard as I can & find peace wherever I can. #raredisease Klippel-Feil Syndrome Freedom

House Calls: Moyamoya Disease - Weill Cornell Medicine Events events.weill.cornell.edu/event/house_ca… This free virtual event (webinar) is Aug 3rd, at 5:30pm click the link to register.

Pls answer & RT. Need some input from my #patient friends. I’m crowdsourcing for a presentation. What do you wish #pharma knew about you as a patient? How should #industry interact w/ #patients? #patientadvocate #RareDisease #chronicillness @wegohealth Savvy Cooperative | #AskPatients HealtheVoices

Save the date and register for Rare New England’s Virtual Conference on October 23rd! Tickets are free for rare disease patients and caregivers. Register here: ow.ly/8Zkt50GdmX7 #raredisease #rarenewengland #virtualRNE

Enter our 2021 Conference Raffle for a yeti cooler (image below) or a $100 Amazon gift card! $10 for 1 entry or $50 for 10 entries. Use this link to enter: paypal.me/RareNewEngland Register for the conference at: ow.ly/uM5v50Ghvna #raredisease #rne #virtualRNE

Let’s make sure North leads the way! North Attleboro Food Access Collaborative Spirit Day! Details below…donate today!

RNE's Annual Conference will be held virtually on Saturday, October 23rd. We will host a day of education and information to the rare disease community. Caregiver and Patient tickets are FREE this year. Don't forget to register! #raredisease #virtualRNE ow.ly/hIVU50GlIZ4

Raise A Glass For Rare🍷 Start your Holiday shopping now! Chateau STE Michelle $12.99 Klinker Brink “ Brick Mason” Red Blend $14.99 Wine available at City Spirits locations in Attleboro/North Attleboro, MA. #raredisease

Over the next weeks & months, tens of thousands of college admission decisions will be released. Your value & worth are not tied to whether you are admitted, deferred, wait-listed, or denied. Trust the research you did to find #FiveFirstChoiceColleges for your Apply List!

Our support groups are happening this Tuesday (12/14) and we would love to see you there. Sign up at the link below #raredisease ow.ly/6V9W50GYWQ9

Our newest World of Rare Disease episode features Dr. Stanley Crooke who shares his career and involvement with the rare disease community, including his foundation, n-Lorem Foundation. Check it out: ow.ly/vOHX50HjvQo #raredisease

Congratulations to North football captains, Tyler DeMattio- Running Back, Jared Vacher- OLine, and Tyler Bannon- Linebacker. All three made the 2021 MHSFCA Division III All-State team! #GOBIGRED!!

For our 7 for Rare campaign, we want you to share with us 7 words of encouragement for rare disease families. Comment below! #7anything4rare #raredisease

Spirit Day Success! Thank you to all who joined us in raising awareness for Heart Health on Friday!

#rarediseaseday rarediseaseday.org

Calling all students interested in Genetics! Join us for a 1-hour webinar featuring professionals in the fields of industrial, clinical, and laboratory genetics March 15th at 6:30 PM ET. Register here: ow.ly/G34r50Ij4lY #raredisease

I’m happy to be part of @HealtheVoices' next #HealtheVoicesHCP session! We'll discuss how caregivers and HCPs can use social media to improve relationships that support positive patient outcomes. Register: tinyurl.com/HCPCaregiver #GenerationCare

Great turnout for last nights DNAC meeting at angletreebrew and for our donation of $2000 to Sisters@Heart. Sisters At Heart is a local charitable organization that gives back to individuals and families affected by heart disease. They do wonderful and important work.

Come follow our new non profit organization! Sisters@Heart We're excited to be on Twitter! Mark Kane @BrianDeck1 x.com/sistersatheart…