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How will you you support on Rare Disease Day this year? 💜🌍 Sharing a personal story, joining an event, or simply starting a conversation, every action is a step closer to equity for the 300 million people living with rare diseases. Find out more: rarediseaseday.org

Did you know that, while individual #RareDiseases impact small numbers of people, there are so many types that, overall, having a #RareDisease isn't a rare experience? Rare is everywhere! 🌍 NORD is making #RareDiseaseDay visible—get more facts and help spread awareness using our social media toolkit: bit.ly/49BBMmQ

Join us for 𝐓𝐡𝐞 𝐏𝐞𝐚𝐜𝐞 𝐏𝐨𝐫𝐭𝐚𝐥🌿 on 𝐌𝐚𝐫𝐜𝐡 𝟐𝟐, from 𝟏𝟏𝐚𝐦 - 𝟏:𝟑𝟎𝐩𝐦 𝐂𝐓 with 𝐕𝐚𝐧𝐞𝐬𝐬𝐚 𝐀𝐜𝐞𝐫𝐨, PsyD, MS, RYT-200 us02web.zoom.us/meeting/regist… This will not be a therapy group, but rather a community space for connection and emotional well-being.

Clinicians & advocates, join NORD this Wednesday, Feb. 12 at 2 p.m. ET for a special Grand Rounds Presentation from the NORD Rare Disease Centers of Excellence Program in honor of #RareDiseaseDay. With the theme of #Equity, we’ll showcase three RD CoE sites—University of Iowa, University of Miami, and UCLA—focused on promoting equitable access to #Healthcare and research for #RareDisease patients. RSVP now! bit.ly/3Eq9LV1

Our ‘I support Rare Disease Day’ pledge cards can be posted on social media, printed for use at your events, or distributed at school and at work. And guess what? They are available in several different languages! Don’t forget to show us how you use them: rarediseaseday.org/downloads/

Behind every face is a unique and powerful story. This #RareDiseaseDay, read the stories behind the faces on our #FacesOfRare wall and add your own photo celebrating yourself or a loved one, living or in memory, here: bit.ly/4g6TEJa #ShowYourStripes #RareDisease

Patients and caregivers, join NORD on Feb. 11 at 4 p.m. ET for a Community Conversation webinar to kick off #RareDiseaseDay! Hear from a rare disease community member with #GeneralizedPustularPsoriasis (#GPP) and learn about the #LivingRareStudy, a groundbreaking effort to track the #RareDisease experience. Register now: bit.ly/4hm6XHl

Facing a crisis? NORD’s Natural Disaster & Hurricane Emergency Relief Program offers help to rare disease patients in need. Reach out: naturaldisaster@rarediseases.org 💙 #EmergencyRelief #RareDisease #DisasterRelief

#PARTNERSUNDAY Join ConnectMed's first excursion of 2025! Join the Camp Cosmos community as they immerse themselves into marine animals & habitats. Join from anywhere online or in person at @birchaquarium 🐠 on March 8! REGISTER: fundraise.givesmart.com/form/_cN_YQ?vi…

The @MoebiusSyndrome Foundation will be celebrating #MoebiusSyndrome Awareness Day on Friday, January 24th, along with their global community of supporters. They invite everyone to wear purple, ask questions, spread awareness, and celebrate with them! Learn more: moebiussyndrome.org/moebius-syndro…

Today is Moebius Syndrome Awareness Day ! This year, Moebius Syndrome Foundation (MSF) embraces the theme "Celebrating 30 Years of Community" to highlight the 30-year journey of MSF as they support individuals & families living with Moebius syndrome. #MSAD2025 #MoebiusMemories

In honor of #IDPD2024, generous donors are offering a matching donation for #GivingTuesday! Donations made today for #moebiussyndrome will be matched dollar for dollar up to $1,350! Every contribution helps! Make a donation: moebiussyndrome.org/donate/

The #MoebiusSyndrome Foundation helps create #connections and f#riendship among those in the #moebiussyndrome community. Help foster a friendship by making a donation for #GivingTuesday today: moebiussyndrome.org/donate/

The next Just for Adults #Chat is coming up on Sunday, December 8, at 1 PM PST / 4 PM EST. Register by Saturday, December 7 to join the call: bit.ly/MSFJustForAdul… #AdultswithMoebius #MoebiusSyndrome #FacialDifference

It’s time to order your gear! Be sure you are dressed in festive gear for #MoebiusSyndromeAwarenessDay - and everyday - to spread awareness. Shop now: bonfire.com/store/moebius-… #MoebiusSyndrome #tshirt #support #awareness

#HappyThanksgiving! We wish you a wonderful day spent with family, friends, and a hearty meal. We are thankful for you and our #moebiussyndrome community!

#RarePatientVoice is on a mission to connect patients and family caregivers to paid medical studies and #surveys, valuing the firsthand experiences of those living with various conditions like #moebiussyndrome. Learn more: #moebiussyndrome" target="_blank" rel="nofollow noopener">rarepatientvoice.com/rp/moebiussynd…

The #MoebiusSyndromeFoundation offers a #Medical #Travel Reimbursement Program to assist U.S. families & individuals w/ #moebiussyndrome. Get reimbursed for up to $2,000 when you apply at least 30 days prior to travel. Apply now: bit.ly/MSFTravel

We know it seems early to start shopping for the year end holidays and the next #MoebiusSyndromeAwarenessDay - but it’s time! Orders must be placed by Dec. 4 to arrive by Dec. 25. And orders placed by Jan. 4, 2025 will arrive for #MSAD25 on Jan. 24. bonfire.com/store/moebius-…

The #MoebiusSyndromeFoundation #November2024 #newsletter is now available! Read it here: conta.cc/48OsHYC If you need to update your email address or sign up for our newsletter, fill out the form to join our community: moebiussyndrome.org/join/ #moebiussyndrome