Global Genes

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

Part 2 of our Financial Assistance Webinar is happening next week! Taking your first steps into the rare community after a diagnosis? Or looking at what your next steps are for treatment? During Part 2 of the Financial Assistance Webinar Series, meet with speakers from Accessia Health, Patient Advocate Foundation and PAN Foundation & learn where to go and how to access the financial assistance resources and services discussed in part 1. Sign up for the webinar below. ?? https://lnkd.in/gHddATzB #CareAboutRare #RareDisease #RareDiseaseAwareness #GlobalGenes

In recognition of World Animal Day, let's take a moment to recognize the rare disease mascot - the zebra! ?? Why the zebra? The origin of this goes all the way back to Theodore Woodward, MD (1914-2005), a physician and University of Maryland professor who is quoted saying "When you hear hoofbeats, think horses not zebras." While his statement was meant as a reminder to med students to look for the common possibilities for an illness vs the uncommon, the quote has since been flipped and used as a reminder that it's important to also look for the uncommon - the zebra. The emphasis on looking at the zebra in his famous quote serves a reminder of the continued need for rare disease awareness. From there, the zebra stripes became a symbol of awareness for the rare disease community. Looking for connections or resources? Visit us at https://lnkd.in/etsViUJ6. #WorldAnimalDay #RareDisease #RareDiseaseAwareness #RareDiseaseCommunity #ShowYourStripes #RareDiseaseStripes #ZebraStripes #GlobalGenes

The recording of part 1 of our Financial Assistance webinar series is now available to view on our website! Wondering what financial assistance resources and services are available to you? Join speakers from Accessia Health, Patient Advocate Foundation and PAN Foundation for a discussion around financial assistance for patients and their families. ?? https://lnkd.in/gHK87-WY #CareAboutRare #RareDisease #RareDiseaseAwareness #GlobalGenes

We’d like to give a warm welcome to our September 2024 Global Advocacy Alliance members! ?? Kinslow TUBB4A Foundation ?? Laryngeal Cleft Network ?? The AIP BIPOC Network ?? KCNQ2 Cure Alliance ?? No Stomach For Cancer ?? A Cure for Sophia and Friends ?? IgA Nep (The IgA Nephropathy Foundation) ?? GRI-UK Learn more about this global community of 750+ rare disease advocacy organizations by visiting the Global Advocacy Alliance page on our website & see how Global Genes can help your organization create community & support networks for rare disease awareness. ?? https://lnkd.in/eEfvKTKR... #CareAboutRare #RareDisease #GlobalAdvocacyAlliance #GlobalGenes #RareDiseaseAdvocacy #RareDiseaseAwareness

Our next webinar is coming up in two weeks! Join Dr. Al Freedman as he provides tools and resources for supporting the mental health needs of rare disease patients, families and communities. Register now at the Zoom link below: ?? https://lnkd.in/e78ebG2K #CareAboutRare #RareDisease #RareDiseaseAwareness #GlobalGenes

As seen at #WeekInRARE, our Event Planning Toolkit is LIVE! Global Genes partnered with Simons Searchlight to bring you the ultimate toolkit companion, crafted especially for the dedicated leader of patient advocacy groups to take the mystery out of putting on an advocacy event. Access this toolkit now! ?? https://lnkd.in/gXM9Z9pW #CareAboutRARE #RareDisease #RareDiseaseAwareness #GlobalGenes #EventPlanningToolkit

"Rare is Uncommon, Unique, Unusually Great, One-Of-A-Kind" - Michele Wright, HEF Keynote Speaker Day 3 of Week in RARE was all about our RARE Health Equity Forum! ???? Today aimed to empower attendees with actionable tools and strategic insights to advocate for a more inclusive rare disease community. From crafting to table talks, we ended off Week In RARE with a fun and informative day! Thank you to all who attended! #WeekInRARE #RAREHealthEquity