Global Genes

As seen at #WeekInRARE, Jeff Levenson’s film “Life Through A Lens,” tells the story of Hollywood photographer, Robert Zuckerman, whose “life through a lens” gets turned upside down after he is diagnosed with a rare, debilitating genetic disease, generally referred to by its initials, APBD. The challenges Robert has faced – continues to face each day – would have been insurmountable for most. But not Robert. 🎥 🌟 Watch this film now! https://lnkd.in/gsYxT-Gq #CareAboutRare #RareDisease #RareDiseaseAwareness #GlobalGenes #RARElyToldStories #ShareYourStory

During our Health Equity Forum at Week in RARE 2024, Suzanne Edison led a great workshop for writing a letter to your rare disease and crafting a mask that shows the super powers you have to deal with that disease. Today, we’re sharing attendee Amber Denton’s letter to Neurodegeneration with brain iron accumulation (NBIA). Read “Dear NBIA” below! ✉️✒️ https://lnkd.in/g-J8Rrxg #CareAboutRare #RareDisease #RareDiseaseAwareness #GlobalGenes #WeekinRARE #RAREHealthEquity

We love to hear about the victories of our Global Advocacy Alliance members! Today, we’re celebrating Castleman Disease Collaborative Network’s successful summit that took place this past July. Read about their efforts at the link below! 🎉 https://lnkd.in/gYmrA3v2 #CareAboutRare #RareDisease #RareDiseaseAwareness #GlobalGenes #GlobalAdvocacyAlliance #GAASuccessStories

The latest IRDiRC publication, "Leaving no patient behind! Expert recommendation in the use of innovative technologies for diagnosing rare diseases'" is now live on Orphanet Journal of Rare Diseases with open access! This paper offers key insights and expert guidance on how cutting-edge technologies can revolutionize rare disease diagnostics. A valuable resource for anyone invested in advancing rare disease diagnosis and care. Read more here 📄: https://lnkd.in/eMWbjtHC #RareDiseases #InnovativeDiagnosis #TechForGood #OpenAccess #IRDiRC

This year, Global Genes partnered with Brad Thompson, M.A., NCC, LPC-S to host a caregivers support program aimed at helping caregivers develop practical, easily accessible tools and resources to take care of themselves and their mental health. The program ran from April to September. As a follow-up, we’ve asked participants to share their experiences before and after participating in the program. Today, we’re highlighting RARE mom and caregiver, Ana Contreras, as she describes how coping with her child’s diagnosis changed how she viewed motherhood and the fear of the unknown. Read her thoughts below: 💭💙 https://lnkd.in/esdw-znG #CareAboutRare #RareDisease #RareDiseaseAwareness #GlobalGenes

This past August, Chris Hopkins, CEO of Devinebio, sat down with us on RARECast to talk about how the company works with patient organizations, how far it will advance programs, and its exit strategy. Hear what Hopkins has to say about Devinebio’s success in the episode below! 🌟🎧 https://lnkd.in/gz_wQ9Zu #CareAboutRare #RareDisease #RareDiseaseAwareness #GlobalGenes #RARECast

🩵 In recognition of World Mental Health Day, we want to highlight the importance of mental health, especially for the rare disease community facing unique challenges. We know that during stressful times, finding resources can be tough, so we've gathered some to help ease feelings of depression, anxiety, and stress, and to improve overall well-being. View our resources here >> https://lnkd.in/eTcptTvm #WorldMentalHealthDay #MentalHealthAwareness #RareDiseaseMentalHealth #RareDisease #RareCaregivers #RareDiseaseCommunity #RareDiseaseResources #GlobalGenes

Exciting news – we’ve launched our RAREly Told StoriesToolkit, presented by Global Genes and The Disorder Channel! If you’ve wanted to make your own rare disease documentary, this toolkit is the place to start. When your story is out there, people will find it and find you. Some will have faced the same diagnosis. Others may have a different rare diagnosis, but still feel a shared bond. These people might become part of your support network or perhaps collaborators as you work to improve the conditions people face. Whichever way your story goes, access the RAREly Told Stories Toolkit, and learn to share your story on video with the rare disease community! 📹 https://lnkd.in/eKJJem3t #CareAboutRare #RareDisease #RareDiseaseAwareness #GlobalGenes #RARElyToldStories #ShareYourStory

As seen at #WeekInRARE, Lori Renna Linton's “Pass Me The Potatoes, Please” focuses on her journey with Hereditary Spastic Paraplegia (HSP) and harnessing the power of her community for a creative fundraising campaign that involves filling your pants with potatoes. Watch her film now at the link below! 🥔 https://lnkd.in/gSPWDw36 #CareAboutRare #RareDisease #RareDiseaseAwareness #GlobalGenes #RARElyToldStories #ShareYourStory

Monica Coenraads, the mother of a daughter with Rett Syndrome, has played a critical role in catalyzing development of therapies to treat the rare, neurological disease. She joined us on RARECast this September to talk about her family’s journey & what other rare disease organizations can learn from her experience. Listen to the episode below. 🎙️https://lnkd.in/e9R5t2UE #CareAboutRare #RareDisease #RareDiseaseAwareness #RettSyndrome #RettSyndromeAwareness #GlobalGenes #RARECast