Thanks for taking a moment to visit this quick and easy resource to get connected! Below you will find a list of resources to get you connected to JGA. Take a peek!
Newsletter: Our weekly newsletter goes out every Friday at 11am EST. It’s a one stop shop for everything you need to know from JGA for that week. If you do nothing else with JGA on a regular basis, please do this, take a moment and read this newsletter. Sign up here by adding your information at the Stay in Touch section on our homepage: https://jordansguardianangels.org
Slack: As our community continues to grow, we went looking at a more robust communication platform with better features and data privacy. We created a Slack workspace “Jordan’s Syndrome Community”. Through Slack we can have private channels for various support groups, topical channels, region and language specific channels, variant specific channels and updates from the JGA Team and Research Team.
Our Facebook page isn’t going anywhere, we just hope that Slack will be an easy way for our chat groups to be in one place. Give it a look and click here to join us today!
Resource Center: If you haven’t taken a moment to visit the resource center on our website please do so. It’s a one stop shop for everything you will need on your journey with Jordan’s Syndrome. Click here for more.
Ambassadors: As our community grows, we asked our families to step up and help our global reach. The Ambassador Program was launched has representatives in numerous regions around the world. The Ambassadors are key to enable access to our communities across the globe, to support new families in their on boarding as they find us and to push us as a foundation to truly grow our mission globally. We would love to expand the program further, so please reach out if you are interested in becoming an Ambassador. Email email@example.com for more information.
Special Projects: Many of our families have been looking for ways to get more involved with our efforts. The Special Projects committee is a way to help move JGA’s mission forward to better support individuals with Jordan’s Syndrome. The committee has really pushed the needle by acting as advisors who help identify gaps and brainstorm solutions. Email firstname.lastname@example.org for more information on getting involved.
Family Database: We want to make sure we are keeping track of our families as we head into clinical trials. Please join our confidential internal database. Click here to join now!
Research: As we launch clinical trials we need as much data as possible for our research team to consider. Please take a moment and join the research today. Questions? Email email@example.com or go to their website: www.simonssearchlight.org.
HALO Project: Our sibling population is also top of mind here at JGA. We are constantly looking at new and innovative ways to support our siblings. To that end, we have tapped Lexi Levine, a JGA Sibling, to head up our Halo Project, a support system for our siblings. Lexi has received specialty training from Sib Shops to better serve our community. Her classes received rave reviews at our Family Conference, and we look forward to having many more opportunities for our siblings to come together in 2023. Email firstname.lastname@example.org for more ways to get connected to this effort.
A Rare Reality Podcast: ‘A Rare Reality’ is now one of the Disorder Channel’s Top Podcasts to listen to! Take a moment and listen today!
Social Links: Join us today on social media: Facebook, Instagram, Twitter, LinkedIn, YouTube and more! We want you to join us!