Jenny H

Healthcare and biotech strategist | all about greater access to better care | rare disease advocate

[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

[Jenny H @heshii]

https://t.co/RrHOpkLukH

[New York Times Opinion @nytopinion]

“I did not realize ‌‌how unexpected circumstances would profoundly influence the direction of my career and my life,” writes Dr. Anthony Fauci ahead of his retirement. “I would soon learn to expect the unexpected.” https://t.co/JzWbZBDFSH

[Plan A @PlanAHealth]

Plan A brings reproductive and sexual healthcare directly to rural communities in Mississippi - our work today is more essential than ever.

[Jenny H @heshii]

@conz My 4 year old had a 104 temp and it turned out to be Epstein-Barr. No other symptoms.

[Danon Disease Foundation @DanonFoundation]

Today, one of our brave Danon warriors got his new heart. Please consider being a donor - you can save a life!

[Danon Disease Foundation @DanonFoundation]

Thank you @biospace for highlighting the challenges of #cardiomyopathy in #DanonDisease patients.

We also appreciate the shoutout! 🙏 @heshii @KimberlyMarinc2 https://t.co/buH8mfrMAW

[Jenny H @heshii]

@DylanMacalinao @cometeer I have!!! Love it.

[Jenny H @heshii]

Tracy Kidder’s Mountains Beyond Mountains was life changing for me and helped set my vision of what I want my impact to be. What an inspiration. What a loss. https://t.co/GARWVEelYq

[Jenny H @heshii]

@rks2305 @healthcareandy Also, if you want to read about his work - Mountains Beyond Mountains by Tracy Kidder - is worth the read.

[Nicholas Kristof @NickKristof]

A lovely obituary for Dr. Paul Farmer. Few people transformed as many lives around the world as he did; few people had such impact on global public health; few had such a reliable moral compass. https://t.co/mgUzvXANDs

[Jenny H @heshii]

@healthcareandy Mine too, Andy.

[Jenny H @heshii]

@rks2305 @healthcareandy Pathologies of Power and AIDS and Accusations

[Jenny H @heshii]

Hi all! Next Monday, I’ll be speaking at #RareDiseaseDay2022 in NYC and sharing more about what we are doing @DanonFoundation. #DanonDisease is a devastating genetic condition that causes #heartdisease and other health issues. I hope you can join by webcast!

[Danon Disease Foundation @DanonFoundation]

Exciting news everyone! We will be joining @RocketPharma next Monday, February 28th for Rare Disease Day. For more information and to register for the webcast, visit:
https://t.co/YLo5FuO3nd

#ShowYourStripes #RareDiseaseDay #DanonDisease

[Jenny H @heshii]

This is a devastating loss for the global health community. Rest In Peace, Dr. Farmer.

[Partners In Health @PIH]

Partners In Health announced that its founder, Dr. Paul Farmer, unexpectedly passed away today in his sleep while in Rwanda.

Dr. Farmer was 62 years old. He is survived by his wife, Didi Bertrand Farmer, and their three children.

1/🧵

[Jenny H @heshii]

@PIH An incredible loss for the global health community. Dr. Farmer inspired my work in healthcare and I’m grateful to have met him. My deepest sympathy to his family and loved ones.

[Jenny H @heshii]

@victoriaregisk @KHNews @CalHealthline Thank you for bringing attention to this. I feel this daily as I do my best to protect my infant who falls into this category.

[Danon Disease Foundation @DanonFoundation]

Today is the start of #NationalHeartMonth.

Danon Disease is often first identified as #cardiomyopathy, although other issues like muscle weakness, eye disease and other symptoms lead to a Danon diagnosis through genetic testing.

[Jenny H @heshii]

Today I’m happy to share the launch of the Danon Foundation, in support of those living with this #RareDisease. Our goal is to enable the best care possible through education, awareness, and community-building. #danondisease

[Danon Disease Foundation @DanonFoundation]

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