Global Genes

Global Genes is pleased to announce the launch of our RARE Navigator Program! The six-week program will take a holistic approach to providing support and education to patients by working to understand and address the unique challenges they may face. RARE Navigator will also enable patients and families to effectively share their stories, become confident co-partners in their treatment plans as well as activated advocates within the rare disease community. 🌟 Learn more by reading the press release here: https://lnkd.in/e5SdVhUv ‎ #CareAboutRare #RareDisease #RareDiseaseAwareness #GlobalGenes #RareNavigator

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 🌟 Charitable Foundation Orphanni Synytsi Learn more about this global community of 750+ rare disease advocacy organizations by visiting the Global Advocacy Alliance page on our website below & see how Global Genes can help your organization create community & support networks for rare disease awareness. 🌐 https://lnkd.in/gEfC3HVW #CareAboutRare #RareDisease #GlobalAdvocacyAlliance #GlobalGenes #RareDiseaseAdvocacy #RareDiseaseAwareness

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

To date, George is the youngest patient in the world to have received NanoKnife Technology (IRE) and is the first pediatric patient to have received a treatment like this on his liver in the UK after being diagnosed with a rare cancer, rhabdomyosarcoma (RMS) at 2 years old. Read more about George’s inspiring journey and surprise rare disease diagnosis that came along with it on the blog 🩺 🌐 https://lnkd.in/g9dp-4QF #CareAboutRare #RareDisease #RareDiseaseAwareness #ShareYourRare

As of this Sunday, we’ll be 1 MONTH AWAY from making some incredible memories and connections! Sound-off in the comments below if you’ll be joining us at Week In RARE, and let us know if you’ve been to either the RARE Advocacy Summit or the RARE Healthy Equity Forum before! ✨👋 & of course, it’s still not too late to RSVP! Follow the link below to complete your registration today! 📩 https://lnkd.in/edb5aGcn #WeekInRARE #RARESummit #RAREHealthEquity #GGSummit #GGSummit2024 #GlobalGenes #CareAboutRare #BeCounted #RAREX #RareDisease

If you were just diagnosed with a rare disease or you are feeling you may remain undiagnosed as you continue to search for answers, you are bound to be wondering “what can I do?” 🤔 We often hear “there is no guide book for this,” and it’s true. It can be hard to know where to begin to find more answers. That’s why we’ve asked six people who have navigated a rare disease journey for their own advice, and how Global Genes has shaped the way they’re able to access resources and education. Read the full blog post up on our website now! 🗺️ https://lnkd.in/evBZRxB9 #CareAboutRare #RareDisease #RareDiseaseAwareness #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. But the metaphor found in the Oz story tracks very well with the experience of finding yourself in a strange, unfamiliar (and sometimes magical) community of rare disease advocates. 🦓🌈 Read more behind the thought of becoming a part of the rare disease community as we approach Week in RARE on our blog — with words from Global Genes’ Director of Community Engagement, Daniel DeFabio, podcaster Effie Parks, and Dr. Nichole Glenn with The Yellow Brick Road Project — at the link below! 🌐 https://lnkd.in/gAjvhUkd

HAPPY BIRTHDAY, GLOBAL GENES! For 16 years now, we are so proud to be serving within the rare disease community and beyond. Thank you for all of the love and support! 🦓 But what’s a party without your friends? Join in on the fun! 🎂Share how you got involved with Global Genes and tag us 🎂Share your RARE story with us by uploading a video or photo with the hashtag #ZebraTales 🎂Share and post about our upcoming Week in RARE conference on social media! #CareAboutRARE #RareDisease #RareDiseaseAwareness #GGSweet16 #GlobalGenes

Global Genes is pleased to announce that applications are now open for the 2024 RARE Compassion Program Fall Semester! This year, we began a pilot program to determine how to better incorporate rare disease education directly into the medical school curriculum. For the fall 2024 semester, we are partnering with Ross University School of Medicine in Barbados to bring the RARE Compassion Program to one full medical school cohort. We invite individuals and families impacted by rare diseases to take part in this year's program. Visit the link below to apply! 📩 https://lnkd.in/eRjsUvgk

T-MINUS 2 DAYS UNTIL OUR BIRTHDAY! 📅🤩 Which means that we have not one, but two of our favorite statements to share leading up to our #GGSweet16! As a RARE parent, Georgene “Gina” Glass, founder of the Dreamsickle Kids Foundation,Inc, understands the importance of being on the front lines, calling for further treatment and cure of sickle cell disease. We are honored to have received her special birthday message and reflection on how Global Genes has supported Gina in her journey! Mike Gragila, RARE dad and founder of the SynGAP Research Fund (SRF) for SYNGAP1-Related Disorders, started his organizational journey after becoming familiar with Global Genes in 2018, and credits Global Genes with providing the education, resources, connection, and community for SRF to take off. Read the full statements of these incredible RARE parents and more all in one place! Our Sweet 16th birthday blog of successes can be found here! 🌟 https://lnkd.in/ey9BwAqY Do you have a special moment or memory tied with Global Genes to share? Post your #GGSweet16 story and tag us! #CareAboutRARE #RareDisease #RareDiseaseAwareness #GlobalGenes