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.

Today, we remember and honor all those who have served and given their lives for our country. #MemorialDay

From all of us, have a happy and safe Fourth of July! #fourthofjuly #freedom #independenceday

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

Join our friends @4hcm on Thursday, August 18th at 6pm EST for the Genetics Special Edition Bighearted Warriors Unite! #DanonDisease expert Eric Adler will also be speaking. To register, visit: 4hcm.org/inspire_events…

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: bit.ly/3A8WyeA

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

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. Danon Disease Foundation @4hcm Children's Cardiomyopathy Foundation World Heart Federation #useheart

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

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

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. bit.ly/3JJE7ma

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

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

Stay informed by following the below accounts. Did we miss anyone? Reply with your go-to source for #RareDisease info! Danon Disease Foundation FA Research Fund Fanconi Hope Pyruvate Kinase Deficiency Foundation Thrive with Pyruvate Kinase Deficiency @rarediseases Global Genes RTW Charitable Foundation @4hcm Children's Cardiomyopathy Foundation Jeffrey Modell Foundation (JMF) HOLDING NAME TO PREVENT ABUSE

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

The Phase 2 gene therapy study of RP-A501 in male patients with Danon Disease is now recruiting for patients. For more information: classic.clinicaltrials.gov/ct2/show/NCT06…

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

Thank you Rocket Pharmaceuticals for inviting the Danon Disease Foundation 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! linkedin.com/posts/rocket-p…

From our live event, to ringing the Nasdaq bell, to lighting up Empire State Building, and much more, this #RareDiseaseDay was one to remember. Thank you for supporting our mission! Watch the replay: youtube.com/watch?v=FNjmfv… Danon Disease Foundation @RareDiseaseDay RTW Charitable Foundation Make-A-Wish New Jersey