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Mashup Score: 2FACES 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)
Source: www.faces-cranio.orgCategories: General Medicine NewsTweet
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Mashup Score: 0Support Group Meetings - Wilson Disease Association - 22 day(s) ago
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.
Source: wilsondisease.orgCategories: General Medicine NewsTweet
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Mashup Score: 1Home | Pathways To Care Expo - 23 day(s) ago
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
Source: www.pathwaystocareexpo.comCategories: General Medicine NewsTweet-
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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Mashup Score: 4Rare Action Network (RAN) on the Road - South Portland, ME - 23 day(s) ago
Take this survey powered by surveymonkey.com. Create your own surveys for free.
Source: www.surveymonkey.comCategories: General Medicine NewsTweet
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Mashup Score: 0
Join NORD for a virtual Community Conversation on The Living Rare Study, the first-ever large-scale effort in the US to track the evolving experience of thousands of individuals and caregivers impacted by rare diseases! Participants will receive step-by-step education on how to participate in the study. NORD staff will demonstrate how to create an IAMRARE account, the process of reading the consent form, how to navigate the study once you are able to access it, and more!
Source: rarediseases.zoom.usCategories: General Medicine NewsTweet
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Mashup Score: 3
The Global Paroxysmal Nocturnal Hemoglobinuria (PNH) Patient Registry registry powered by NORD platform.
Source: pnh.iamrare.orgCategories: General Medicine NewsTweet
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Mashup Score: 1Focus of NORD study: Rare disease community's lived experiences - 28 day(s) ago
NORD has launched a U.S. study called Living Rare to capture the lived experiences of rare disease patients and identify changing unmet needs.
Source: pulmonaryfibrosisnews.comCategories: General Medicine NewsTweet
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Mashup Score: 0Oregon man follows ‘wild, impossible dream’: he quits job to sail around the world with his cat - 1 month(s) ago
Oliver Widger recently set sail from the Oregon coast toward Hawaii, accompanied only by his cat, Phoenix.
Source: www.oregonlive.comCategories: General Medicine NewsTweet
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Mashup Score: 2Honoring Nurses on International Nurses Day: The Bridge Between Rare Disease and Hope - National Organization for Rare Disorders - 1 month(s) ago
By Alicia Truelove, MSN, RN, CV-BC, NPD-BC
Source: rarediseases.orgCategories: General Medicine NewsTweet-
For #InternationalNursesDay, NORD Rare Action Network Ambassador for California, Alicia Truelove - a registered #nurse and #RareDisease patient herself - wrote about the importance of #nurses as the first line of support for rare patients. Read her piece: https://t.co/emFavbjwjW https://t.co/Jr8bxCyV4A
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Mashup Score: 1
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.
Source: rarediseases.zoom.usCategories: General Medicine NewsTweet
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