FD/MAS Alliance invites all those in the FD/MAS community (those diagnosed with fibrous dysplasia, McCune-Albright Syndrome and family members of the diagnosed, as well as friends, clinicians, and researchers) to submit visual and literary art to the first-ever FD/MAS Global Awareness Art Competition. The contest is open to artists of all ages and the theme …
BioNews will be using social media and community content to help raise awareness and answer the question, “Why does rare disease awareness matter to you?” We will use the hashtag #WhyRare throughout our social media platforms, particularly our corporate platforms of LinkedIn, Facebook, and Instagram. This year, it is time to get all of us …
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This is Chondrosarcoma Foundation's international effort to educate the public about this rare bone cancer and to build a coalition to support more research and clinical trials. The more attention we create, the more support we generate. Join in by wearing a yellow ribbon or a yellow wrist band and post pictures wearing yellow on …
Are you passionate about rare diseases and public policy? Are you interested in getting more involved in policy at the federal or state level? In 2023, we are continuing to make our rare voices and priorities heard, and NORD is excited to present a new volunteer opportunity. Our National and Regional Policy & Advocacy Taskforces will provide …
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We welcome you for this 9th World Congress on Cardiology and Cardiovascular Therapeutics time in Rome, Italy during February 20-21, 2023. The main thought of our conference is “Guidance and Management for the Cardio Vascular Disease during the COVID-19 Pandemic". CARDIOLOGY2023 Conferences will be an examination of the newest successions in cardiac disorders, recovery and …
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NORD Pennsylvania Rare Action Network Virtual Rare Disease Day Friday, February 24, 2023 This is a virtual event 12:00 pm – 1:00 pm One of the greatest challenges individuals living with a rare disease, their families, and patient advocates have is finding and accessing information and resources to help them advocate for themselves and their …
What: Free Webinar: PFIC: Genetic Contributions to Its Phenotype and Treatment Considerations When: Fri, Feb 24, 2023 2:00 PM - 3:00 PM EST Jim Squires, MD, from the Division of Pediatric Gastroenterology, Hepatology, and Nutrition at UPMC Children's Hospital of Pittsburgh and part of the Center for Rare Disease Therapy, will discuss progressive familial intrahepatic …
UTSW and the Dallas Zoo are hosting a Rare Disease Day event. Zoo admission is $8. There will be an information/contact booth, picture booth, and group picture for all UTSW personnel present. Wear stripes and come show how UTSW supports patients with Rare Disease!
NORD Arkansas Rare Action Network Rare Disease Day Saturday, February 25, 2023 Arkansas College of Osteopathic Medicine Main Building, 7000 Chad Colley Blvd., Fort Smith, AR. 72916 Event is from 11:00 am – 4:00 pm There is no cost to participants to attend this event. One of the greatest challenges individuals living with a rare …
NORD California Rare Action Network Virtual Rare Disease Day Saturday, February 25, 2023 THIS IS A VIRTUAL EVENT 11:00 am – 12:30 pm PST One of the greatest challenges individuals living with a rare disease, their families, and patient advocates have is finding and accessing information and resources to help them advocate for themselves and …
NORD Texas Rare Action and Baylor College of Medicine/Texas Children’s Hospital Genetics are partnering to host a family-friendly Rare Disease Day State Resource Fair. One of the greatest challenges individuals living with a rare disease, their families, and patient advocates have is finding and accessing information and resources to help them advocate for themselves and …
The Ohio Rare Action Network invites you to join us for Rare Disease Day in Cleveland Tuesday, February 28, 2023 at 8:30 AM Case Western Reserve University, Tinkham Veale Ballroom, 11038 Bellflower Road, Cleveland, OH 44106 You’re invited to join patients, caregivers, and other rare disease advocates as we raise awareness and celebrate the rare …
