Author: Emily Hall

RARE-X Enrollment Party

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

Friday, January 27th, 11am Eastern
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.