#GGSweet16: We love experiences that come from meeting others in the rare disease community at Global Genes events! Today’s story comes from Vicky Arteaga & Debbie Requesens with SHER. Read on the blog below! 🥳 💭 globalgenes.org/blog/global-ge…

T-MINUS 2 DAYS UNTIL OUR BIRTHDAY! 📅🤩 Which means that we have not one, but two of our favorite statements to share for our #GGSweet16! Check out what these RARE parents turned-organizational-leaders have to say about their connection with Global Genes: globalgenes.org/blog/global-ge…

NEWS: Global Genes is now part of ICHOM's Patient Partner Alliance, which is an initiative designed to elevate patients to equal partners in their care, empowering them through shared decision-making! Find out more about ICHOM here: bit.ly/ICHOM_GlobalGe…

Apps. are now open for the 2024 RARE Compassion Program Fall Semester! This year, we have joined forces with medical students from Ross University School of Medicine to invite individuals + families impacted by rare diseases to take part in the program: go.globalgenes.org/46JK2Ru

HAPPY BIRTHDAY, GLOBAL GENES! For 16 years now, we are so proud to be serving within the rare disease community & beyond. Thank you for all of the love and support! 🦓🎉 #CareAboutRARE #RareDisease #RareDiseaseAwareness #GGSweet16 #GlobalGenes

You might be right to say we at Global Genes got a bit cuter than necessary with our 2024 Week in RARE theme: There’s No Place Like Hope. However, it describes the experience of finding yourself in the RARE community. Read more behind the thought HERE 🦓: globalgenes.org/blog/the-yello…

If you were just diagnosed with a rare disease or you are feeling you may remain undiagnosed as you search for answers, you may be wondering “what can I do?” 🤔 We’ve asked 6 people who have navigated a rare disease journey for their own advice 🗺️: go.globalgenes.org/4fWHDaj

As of this Sunday, we’ll be 1 MONTH AWAY from making some incredible memories! Reply below if you’ll be joining us at Week In RARE! ✨👋 & of course, it’s still not too late to RSVP! Follow the link below to complete your registration today! 📩 go.globalgenes.org/3Xev2rZ

After being diagnosed with rhabdomyosarcoma at 2yrs old, George’s family also received a surprise rare disease diagnosis. Read about George’s inspiring journey on our Story blog at the link below 🩺 🌐 go.globalgenes.org/3XlqAr7 #CareAboutRare #RareDisease #ShareYourStory

The rare disease journey is filled with occasions for grief. From grieving diagnosis, or lack of diagnosis, and too often to grieving the loss of a loved one. On National Grief Awareness Day, Global Genes sees you and is here to support you. 🦋 #NationalGriefAwarenessDay

We’d like to give a warm welcome to our August 2024 Global Advocacy Alliance members! 🌟 Persona Foundation 🌟 Parent to Parent USA 🌟 Think of me Please 🌟 Tough Genes 🌟 My Rare Universe Foundation 🌟 Charitable Foundation Orphanni Synytsi

Global Genes is pleased to announce the launch of our RARE Navigator Program! 🌟 Learn more by reading the press release here: go.globalgenes.org/3MTY6ix #CareAboutRare #RareDisease #RareDiseaseAwareness #GlobalGenes #RareNavigator

Virtual registration for Week in RARE is NOW AVAILABLE! 🎉This year’s virtual experience is more than streaming sessions, but allows you to engage in real-time with speakers and live polling. Follow the link below and snag your virtual attendee spot! 💻go.globalgenes.org/4cUz8K9

Don’t miss this webinar tomorrow! 📅 Join speakers from Accessia Health, Patient Advocate Foundation and PAN Foundation for a discussion around financial assistance for patients and their families. Register at the link below: 📩globalgenes-org.zoom.us/meeting/regist…

Our schedule is finalized & speakers are set, so we’re sharing the official Week in RARE Agenda! Choose from 3 tracks with sessions for rare individuals, caregivers, researchers, & more. For a full view of the conference agenda, visit the link below! 🦓 go.globalgenes.org/4ghh8MZ

This year, Global Genes partnered with Brad Thompson, M.A., NCC, LPC-S to host a caregivers support program aimed at helping caregivers take care of themselves and their mental health! Read about Carrie's experience on our blog 💭: globalgenes.org/blog/caregiver…

Following our RAREly Told Stories Workshop in Feb, we’re excited to start sharing some of the incredible short films submitted! Learn about SYNGAP1 with Jansen & her family🎥: globalgenes.org/blog/jansens-j… #CareAboutRare #RareDisease #RARElyToldStories #SYNGAP1Awareness #SYNGAP1

RARECast welcomed Yiwei She, founder of the TNPO2 Foundation, to talk about how her family was able to treat her son Leo with an experimental ASO, & how the TNPO2 Foundation is working to accelerate the diagnosis of children with ultra-rare conditions 🎧 go.globalgenes.org/4dbdPUJ

Following our RAREly Told Stories Workshop in Feb, we’re excited to start sharing some of the incredible short films submitted! Watch Maurya's Rare Odyssey & learn more about SPG4🎥: globalgenes.org/video/mauryas-…… #CareAboutRare #RareDisease #RARElyToldStories #SPG4Awareness

The recording of “Showing Up 101” is now available on the blog. This session is a gently guided, grief informed experience intended to share a language of loss, frameworks for grieving + coping, & promote openness and connection for moving with loss 🦋 globalgenes.org/video/webinar-…