Danon Disease Foundation

A trusted resource for people living with Danon Disease

[Danon Disease Foundation @DanonFoundation]

@MarfanFdn Dr. Lauren Testa was amazing! We love her passion for science and how honest she was about her own journey. 👏👏👏

[Danon Disease Foundation @DanonFoundation]

We are excited to represent the Danon disease community at the Rare Disease Summit hosted by the @BostonGlobe on February 24th in Boston. We hope to see you there!

To attend in-person or virtually, visit: https://t.co/YnN9qbdNor

[Danon Disease Foundation @DanonFoundation]

Behind the scenes, we’ve been pushing forward for the Danon disease community. Our community newsletter is out with a reflection on 2025 and what's ahead in 2026.
Read our newsletter (or sign-up for future updates): https://t.co/xs0rtru9er
#danondisease #raredisease

[Danon Disease Foundation @DanonFoundation]

Thank you @BeckyQuick for bringing much needed attention to the rare disease community. #danondisease

[Squawk Box @SquawkCNBC]

CNBC’s @BeckyQuick details her daughter’s rare disease journey, and announces launch of CNBC Cures initiative.
https://t.co/5H6uzmfzof

[Rocket Pharmaceuticals @RocketPharma]

From our live event, to ringing the @Nasdaq bell, to lighting up @EmpireStateBldg, and much more, this #RareDiseaseDay was one to remember. Thank you for supporting our mission!

Watch the replay: https://t.co/BiziDpzmOt

@DanonFoundation @RareDiseaseDay @CharitableRTW @wishnj

[Jenny H @heshii]

Thank you @RocketPharma for inviting the @DanonFoundation to #RareDiseaseDay2025 to share our stories from our community about life with #DanonDisease. We are grateful for the collective power of the rare disease community!

https://t.co/Z1wopcSEbw

[Danon Disease Foundation @DanonFoundation]

Congrats to the Papillon team! Good news and another step forward for people living with #DanonDisease

[Latest News from Business Wire @NewsFromBW]

Papillon Therapeutics Receives Rare Pediatric Disease Designation from the U.S. Food and Drug Administration for PPL-002 for the Treatment of Danon Disease https://t.co/r1LdUob83u

[Danon Disease Foundation @DanonFoundation]

The Phase 2 gene therapy study of RP-A501 in male patients with Danon Disease is now recruiting for patients. For more information: https://t.co/ijNfY21vlT

[Danon Disease Foundation @DanonFoundation]

Exciting news from Rocket and hope for our community! #danondisease #clinicaltrials

[Rocket Pharmaceuticals @RocketPharma]

#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: https://t.co/RNWINxM1fW

[Rocket Pharmaceuticals @RocketPharma]

Stay informed by following the below accounts. Did we miss anyone? Reply with your go-to source for #RareDisease info! @DanonFoundation @FAresearchfund @fanconihope @2021PKDF @TwPKD @rarediseases @GlobalGenes @CharitableRTW @4hcm @CCFheartkids @Info4PI @IDFCommunity

[Danon Disease Foundation @DanonFoundation]

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

[Danon Disease Foundation @DanonFoundation]

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

[Rocket Pharmaceuticals @RocketPharma]

We’re excited the FDA has granted #RMAT designation to RP-A501 for #DanonDisease, a fatal genetic cardiac disease with no disease-altering therapies available. Today’s news represents an important step for both patients & the field of #genetherapy. https://t.co/nubk361GtA

[Danon Disease Foundation @DanonFoundation]

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

[Danon Disease Foundation @DanonFoundation]

Merry Christmas everyone! Wishing you peace, joy, and health during this holiday season and new year. #merrychristmas #happynewyear #holidays #gratitude #danondisease #danonfamily

[Rocket Pharmaceuticals @RocketPharma]

Join us today as we shed light on the importance of pursuing genetic screening for inherited heart diseases and celebrate the work of advocacy and support groups dedicated to improving people’s lives. @DanonFoundation @4hcm @CCFheartkids @worldheartfed #useheart

[Danon Disease Foundation @DanonFoundation]

We ❤️ science! Grateful for the experts who deliver on innovation 🙏

[TODAY @TODAYshow]

@tvkatesnow The surgery will be a game changer for other children born with heart defects. https://t.co/haMAUTl4Yi

[Danon Disease Foundation @DanonFoundation]

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: https://t.co/8YYloTeVbk

[Danon Disease Foundation @DanonFoundation]

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: https://t.co/7fhQYVfaEA

[Patient Worthy @PatientWorthy]

What are some challenges of living with a #RareDisease or #ChronicIllness that people may not think of?