'I have PKU, and until there is a cure, I will always have a form of treatment, levels to draw, and...' globalgenes.org/story/packing-…
#CareAboutRare #AwarenessDays #pku #MetabolicHealth #RareDisease #PKUAwarenessMonth

✨ If you know someone who has had a significant impact in the rare disease community, nominate them for a RARE Champion of Hope award. Nominations are being accepted until June 7 at 12pm EST. Nominate Here: go.globalgenes.org/3ypcn2A
#RAREChampionofHope #RareHeroe #CareAboutRare

European Study Identifies Sources of Delayed Diagnosis & More — This Week in RARE Daily 📰
Get up to speed on the latest news from this week: go.globalgenes.org/4bJAMhQ

#RareDaily #RareNews #CareAboutRare #RareDiseaseAwareness #GlobalGenes

✨ Join us in Kansas City, MO, from September 25-28, 2024, at the fabulous Loews Kansas City Hotel for Week in RARE. 3 events packed into 3 days! Don't miss out - secure your spot now.
Learn more: go.globalgenes.org/3WxL0NT

#WeekinRARE #RARESummit #RAREHealthEquity

Damian Carbajal, Air Force Veteran & RARE Patient Warrior, shares his journey after being diagnosed. Read: globalgenes.org/story/the-war-…
#RareDisease #CareAboutRare #GlobalGenes

Rare Disease Focused Therapeutics M&A Soars & More — This Week in RARE Daily

Catch up and read the full articles: go.globalgenes.org/4bvUUUr

#RareDaily#RareNews#CareAboutRare#RareDiseaseAwareness #GlobalGenes

Today is #InternationalThalassemiaDay (May 8). Maria Hadjidemetriou, who lives with thalassemia, met with her #RARECompassionProgram partner, med student Julia Su, to talk about the obstacles thalassemia patients face. Watch: globalgenes.org/video/bright-f…

Congratulations to all of the recipients of the 2024 Funding Opportunities! Read more about these organizations and their projects here:
RARE Mental Health Impact Grant: go.globalgenes.org/44wfxxk

RARE Research Readiness Fellowship: go.globalgenes.org/3JOEhaE

#CareAboutRare

As we recognize #MentalHealthAwarenessMonth in May, Ronda Thorington, LPC, brings her wealth of knowledge and experience to shed light on mental health and wellness within the rare disease community.
globalgenes.org/story/beyond-t…

#CareAboutRare

FDA Clears First Trial of Prime Medicine’s Editing Therapy & More — This Week in RARE Daily. Catch up and read the full articles: globalgenes.org/blog/fda-clear…

#RareDaily#RareNews#CareAboutRare#RareDiseaseAwareness#GlobalGenes

Extending a warm welcome to our April Global Advocacy Alliance members! Join a community of orgs and support groups who are committed to changing the way the world tackles rare disease: go.globalgenes.org/3Qs62JQ

#CareAboutRare #AdvocacyAlliance #RareDiseaseAdvocacy

Thank you to all who participated in the RARE Drug Development Symposium with us and UPenn Million Dollar Bike Ride by ODC. We hope have equipped you with actionable next steps and fresh knowledge to share within your community.

hashtag#RDDS hashtag#CareAboutRare hashtag#RareResearch

We've arrived at the last day of the RARE Drug Development Symposium. There are 3 sessions to live stream today starting at 9am ET. If you haven't registered, there is still time. Click here: go.globalgenes.org/3JGecKI

#RDDS #CareAboutRare #Philadelphia #RareDisease

Day 1 of the RARE Drug Development Symposium starts at 9am ET today! Unable to attend in person? You can still register to live stream today's sessions! Click here to register: go.globalgenes.org/44hbhSr

#RDDS #CareAboutRare #RareDisease #Philadelphia

The RARE Drug Development Symposium is set to kick off in less than 24 hours. Thank you to this year's sponsors and partners for their support in bringing this event to life.
#RDDS #RareDisease #CareAboutRare

April 29 is #UndiagnosedDiseaseDay . We reached out to the Undiagnosed Diseases Network Foundation to share how they help those seeking a diagnosis and spoke to Gerald Sweeney who serves on their board of directors. Read the full article: go.globalgenes.org/3WaLE3F
#CareAboutRare

Profluent Releases AI-Created and Open-Source Gene Editor & More — This Week in RARE Daily. Read: go.globalgenes.org/4dimG8p

#RareDaily #RareNews #WeekinRareDaily #CareAboutRare #RareDiseaseAwareness #GlobalGenes

Today, National DNA Day is to commemorate the discovery of DNA’s double helical structure. In recognition, Director, Patient Services and geneticist, Shruti Mikas, dives deep into Cracking the Code on Rare Diseases and Unlocking Hope: go.globalgenes.org/3W7OMgH

(pictured: Founder & CMO, Nicole Boice sharing her message of hope) April is designated as the National Month of Hope to inspire individuals worldwide to share a light of hope with others. Global Genes was built on the foundation of hope.
#HopeIsInOurGenes #CareAboutRare

We're 1 week away from the 2024 RARE Drug Development Symposium!

It's not too late! Register for the virtual conference: go.globalgenes.org/3W4eUcn
#RDDS #RareDisease #CareAboutRare #LiveStream