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    FACES Camp | FACES - 20 day(s) ago

    FACES Camp director Ashley Rhodes, born with Crouzon syndrome, is highly involved in hands-on leadership and supervision of all aspects of FACES Camp. She is excited to bring the camp experience to children with facial differences. Ashley says, “It’s important for kids to know that they can do almost anything they set their mind to, regardless of their facial difference.” Accreditation by the American Camp Association (ACA) and two generations o f family management/ownership (70+ years combined experience)

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    • Register now for FACES Camp, a traditional overnight summer camp for kids with facial differences, ages 7-17, this June 15-20 in Cloudland, #Georgia! Details and scholarship info here: https://t.co/n0bW511DR1 #FACESCamp @faces_cranio #FacialDifference #FacialDifferences

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    Wilson Disease Patient Support Group Meetings One of the silver linings to come out of the COVID19 pandemic is the use of virtual technologies to make personal connections and provide support. This is especially important for people going through the journey of living with a rare medical condition, like Wilson disease.

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    • Living with or caring for someone with #WilsonDisease? Join a free Wilson Disease virtual support group, held 8 times a year and led by social workers or trained peers. Connect, share, and find support. Hosted by NORD Member Organization @wilsondisease. https://t.co/zhApXFW0OE

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    Save the Date: May 30th in Fort Smith, AR | More updates coming soon! Bringing together the rare disease community in Arkansas for a day of advocacy and support. 1000 Fianna Way, Fort Smith AR 72916 *Vendors please register further down the page. The Pathways to Care Expo connects individuals and families affected by rare conditions with valuable services, information, and community support. Join us for an afternoon dedicated to visibility, empowerment, and community. Meet advocacy groups, healthcare

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    • The Pathways to Care Expo is a free community health fair designed to connect people in the #Arkansas area impacted by rare diseases to community based resources and support services. Learn more and RSVP: https://t.co/xv8XLYGGIG This event takes place Friday, May 30, from 1-5 https://t.co/BBsaUaIWEL

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    • #Maine advocates, equip yourself to make a difference! NORD is hosting an advocacy workshop near you on Friday, June 6 from 9:00 AM – 1:00 PM in South Portland. ZERO experience needed to participate. RSVP: https://t.co/Ofw04M3W0q #NORD staff will provide: - Education on https://t.co/Rqvv6dQvwF

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    NORD has launched a U.S. study called Living Rare to capture the lived experiences of rare disease patients and identify changing unmet needs.

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    • Living Rare Study News Alert! Read in @pulmonaryfibros how NORD’s #LivingRareStudy is making sure #RareDisease patients and caregivers are heard – and transforming real-world experiences into powerful data: https://t.co/ZPa7f69KyC Join the Living Rare Study today:

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    In the coming months, Congress could vote on legislation that would strip Medicaid coverage and funding away from millions of rare disease patients. Please join us to learn more about the importance of the Medicaid program to rare disease patients and caregivers, tips on how to tell your story, and how to make your voice heard on this and other issues impacting the rare disease community! We will also discuss NORD’s programs and services, including how the Living Rare Study is helping us understand the rare disease community’s health care coverage and access experiences.

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    • Reminder! Join #NORD's virtual advocacy training this Tuesday, May 13 at 12 p.m. ET to learn how to help us advocate for #Medicaid, a vital program for millions in the #RareDisease community: https://t.co/CO9518wrBn #ProtectMedicaid #RareDiseases #HealthInsurance https://t.co/1DwDtBVHMB