In the News!
Ogden Syndrome is extremely rare, but we’ve made the news because our families are such great advocates!
Click on the links below to see our community make headlines!
Tri-Cities girl is one of 100 in the world with rare genetic disorder
We love Lucy: Souixland parents raise awareness for daughter’s rare disease
Gliding Stars provides therapy on ice for people with disabilities
My Daughter Has Ogden Syndrome, and This Is What It’s Like
Our involvement with other Rare organizations and projects has been featured, as well:
Our friends at RARE-X are launching an innovative and exciting program later this year called Xcelerate RARE! According to RARE-X, “The Xcelerate RARE: A Rare Disease Open Science Data Challenge is bringing together researchers and data scientists in a collaborative and competitive environment to make the best use of patient-provided data to solve big unknowns in healthcare. The Challenge will launch to researchers in late May 2023, focused on rare pediatric neurodevelopmental diseases” (https://rare-x.org/open-science-data-challenge/).
What does this mean for Ogden CARES and our patient community? We’ve got some work to do! We need to collect as much data as possible to make Ogden Syndrome a prime candidate for this research opportunity.
Ogden Families – you’re invited to the RARE-X ENROLLMENT PARTY!
Your child is newly diagnosed – This is a chance to meet “face to face” with some of our community members while also providing crucial information to answer the question “What is Ogden Syndrome?”
You’ve been hesitant to enroll because you do not speak English – Don’t worry! The surveys can be translated into many languages, and you can follow the video of the enrollment process if you need help.
You’re hesitant to put your information and that of your child out into the world – We’ll have RARE-X reps on the call to help answer any questions about data sharing and privacy!
You’re confused about how to enroll and get started – Don’t worry; we’ll walk you through it, step by step!
You think you might have already done this, but you’re not sure – Jump on the call! We’ll help you get logged in and make sure you’re completely up to date.
You haven’t updated your surveys in awhile – New surveys come out all the time, and our kids’ symptoms change all the time! We need to continuously capture data to make sure that we have updated, correct information.
“Global Genes and RARE-X have come together around a shared vision of empowering the next generation of advocates to drive progress within and across rare diseases. The combined organization will provide rare disease advocates with a continuum of services, resources, and connections to accelerate the path from initial support and awareness through diagnosis, drug development, and access to treatments, using a collaborative approach that involves biopharma, clinicians, researchers, and funders, with data as a central core” (shared vision statement provided by Global Genes and RARE-X).
If you’re not familiar with Global Genes, check them out! They are an amazing resource for the rare disease community.