Danon Disease Foundation
@DanonFoundation
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A trusted resource for people living with Danon Disease
Joined December 2019
Our mission at the Danon Disease Foundation is to empower those living with #DanonDisease by providing trusted information, resources and support to help navigate life, from diagnosis to treatment. For more information, visit our website #linkinbio.
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RT @RocketPharma: From our live event, to ringing the @Nasdaq bell, to lighting up @EmpireStateBldg, and much more, this #RareDiseaseDay wa….
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RT @heshii: Thank you @RocketPharma for inviting the @DanonFoundation to #RareDiseaseDay2025 to share our stories from our community about….
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Congrats to the Papillon team! Good news and another step forward for people living with #DanonDisease.
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The Phase 2 gene therapy study of RP-A501 in male patients with Danon Disease is now recruiting for patients. For more information:
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Exciting news from Rocket and hope for our community! #danondisease #clinicaltrials.
#NewsUpdate🚀We've reached final alignment with the @US_FDA on the trial design for our global Phase 2 pivotal trial of RP-A501 for #DanonDisease, a devastating cardiovascular condition impacting an est. 15,000-30,000 people in the US & Europe. Learn more:
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RT @RocketPharma: Stay informed by following the below accounts. Did we miss anyone? Reply with your go-to source for #RareDisease info! @D….
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Happy Mother's Day! We celebrate all the moms out there, especially those who live and care for those with #raredisease. Thank you for your strength, courage, perseverance, and love! #mothersday #danondisease
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Today is #rarediseaseday, a day to raise awareness for people living with conditions and diseases that are overlooked and undiagnosed. In the US, there are 30M people affected and globally there are over 6,000 rare diseases. Learn more about #DanonDisease #LinkInBio
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RT @RocketPharma: We’re excited the FDA has granted #RMAT designation to RP-A501 for #DanonDisease, a fatal genetic cardiac disease with no….
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Wishing everyone a very healthy and happy new year! “With the new day comes new strength and new thoughts.” —Eleanor Roosevelt. #newyears #nye #happy2023 #goodbye2022 #danondisease
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Merry Christmas everyone! Wishing you peace, joy, and health during this holiday season and new year. #merrychristmas #happynewyear #holidays #gratitude #danondisease #danonfamily
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RT @RocketPharma: Join us today as we shed light on the importance of pursuing genetic screening for inherited heart diseases and celebrate….
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We ❤️ science! Grateful for the experts who deliver on innovation 🙏.
@tvkatesnow The surgery will be a game changer for other children born with heart defects.
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Kim and Amy, two of our co-founders, have received questions about life with Danon Disease, and they would love to answer them live on Zoom, Sat, Sept. 24th at 12:00pm ET. Please join and as a community, we can help each other! . Click here to register:
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Join our friends @4hcm on Thursday, August 18th at 6pm EST for the Genetics Special Edition Bighearted Warriors Unite! #DanonDisease expert @EricAdler17 will also be speaking. To register, visit:
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RT @PatientWorthy: What are some challenges of living with a #RareDisease or #ChronicIllness that people may not think of?.
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Today, we remember and honor all those who have served and given their lives for our country. #MemorialDay
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Happy Mother’s Day to all the moms out there! . We want to give a special shout out to those moms living with #DanonDisease and to all the moms in the #raredisease community. We see you, celebrate your strength and perseverance, and walk alongside you in this journey.
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