Skip to main content

Category: Rare Organizations

Ogden C.A.R.E.S. joins Rarebase!

We have launched our first big research project aimed at uncovering a potential therapeutic for Ogden Syndrome!
Ogden C.A.R.E.S. has officially partnered with Rarebase in an effort to identify an already FDA-approved medication that will benefit our loved ones living with Ogden Syndrome!
Rarebase is already very busy engineering an Ogden Syndrome cell line, so they can begin investigative drug screens, and we are hoping the next year will give us some promising options to further pursue. Specifically, Rarebase is looking for a medication that amplifies the NAA10 protein, which is the deficient protein that causes the symptoms of Ogden Syndrome to manifest. The goal of tackling the root-cause biology of a syndrome is that it would improve symptoms across multiple areas. While there are no guarantees that a viable fit will be found, we are thrilled to be represented in the drug repurposing space and humbled to be in a position to start looking.
To be taking the first pre-clinical steps on the hunt for a treatment option for this community is a dream come true, and it took a lot of hard work and a collective effort to get here. We are especially grateful to Jody Smith, President and Owner of CornerStone Staffing, for her extremely generous donations, without which this dream would still be years away.

Xcelerate RARE is coming soon!

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.

Families – you can stay up-to-date on our weekly RARE-X challenges and raffle drawings on both the Ogden Syndrome-NAA10 Family Support Group and the NAA10 Families Together pages on Facebook.

RARE-X Enrollment Party

Ogden Families – you’re invited to the RARE-X ENROLLMENT PARTY!

Friday, January 27th, 11am Eastern
Please register to attend by clicking here.
Reasons you should join us:
  1. 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?”
  2. 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.
  3. 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!
  4. You’re confused about how to enroll and get started – Don’t worry; we’ll walk you through it, step by step!
  5. 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.
  6. 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.
We only have about 110 families in our community. Of those families, only 37 have enrolled with RARE-X. That’s like a 110-piece puzzle that is missing over 2/3 of its pieces. It leaves us with an incomplete and confusing picture of what Ogden Syndrome really looks like. If we can complete the picture, we can unlock the future.
You can access our RARE-X patient page here. If you’ve already enrolled, be sure to log in periodically to update your information or complete any newly available surveys.

Global Genes and RARE-X are merging!

“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.

Donate
Research
Contact
Donate Now