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@FoundationUSP7 Profile picture

Hao-Fountain Syndrome

@FoundationUSP7

Our mission is to cure Hao-Fountain Syndrome. We do this by funding research and identifying more patients. https://t.co/k9ugviDUKH

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FoundationUSP7 Profile Picture
Hao-Fountain Syndrome
 @FoundationUSP7
12 Nov

Our latest newsletter is out! Make sure to check it out today. #usp7 #hafous #haofountainsyndrome usp7.salsalabs.org/november2024ne…

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FoundationUSP7 Profile Picture
Hao-Fountain Syndrome
 @FoundationUSP7
12 Sep

We still have sponsorship opportunities available for our upcoming Hao-Fountain Syndrome Symposium and Family Conference. Sponsorships will directly contribute to the success of this event. We are offering five levels of sponsorship. Visit lnkd.in/ekZNBTqT

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FoundationUSP7 Profile Picture
Hao-Fountain Syndrome
 @FoundationUSP7
1 Sep

Attending our Symposium and Family Conference on September 24? If so, make sure to book your hotel room by tomorrow, September 2nd, to get our exclusive rate of just $209 per night! Book now to take advantage of this exceptional rate. hyatt.com/en-US/group-bo… #familyconference

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FoundationUSP7 Profile Picture
Hao-Fountain Syndrome
 @FoundationUSP7
28 Aug

Our conference is just around the corner! Make sure to register today and book your room before September 2nd to ensure you get our exclusive room rate of just $209 per night! We can't wait to see you at the Grand Hyatt Atlanta on September 24th. usp7.org/2024-symposium

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FoundationUSP7 Profile Picture
Hao-Fountain Syndrome
 @FoundationUSP7
23 Aug

One of our beautiful Hao-Fountain Syndrome Warriors, an amazing young woman from Australia is running a 10k in honor of Hao-Fountain Syndrome and raising funds for research. Show her your support by making a donation today: usp7.salsalabs.org/tanaefundraiser #usp7 #hafountainsyndrome

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FoundationUSP7 Profile Picture
Hao-Fountain Syndrome
 @FoundationUSP7
13 Jun

Be part of something amazing! Join us for our 2024 Hao-Fountain Syndrome Symposium and Family Conference in Atlanta on September 24. Register today! usp7.salsalabs.org/2024Symposiuma… #HAFOUS #raredisease #HaoFountainSyndrome #USP7 #symposium #familyconference #atlanta

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FoundationUSP7 Profile Picture
Hao-Fountain Syndrome
 @FoundationUSP7
3 Jun

Our Lunch and Learn is on the calendar! Join us on June 17 for an amazing session all about precision medicine. Click the link to learn more and to sign up today! You won't want to miss it! usp7.salsalabs.org/lunchandlearnj… #usp7 #hafous #haofountainsyndrome #lunchandlearn

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FoundationUSP7 Profile Picture
Hao-Fountain Syndrome
 @FoundationUSP7
30 May

Calling all Hao-Fountain Syndrome families in the United States! Are you interested in learning more about your child's disease while also helping advance scientific research? Consider donating your child’s blood sample to an anonymous biorepository. usp7.salsalabs.org/researchopport…

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FoundationUSP7 Profile Picture
Hao-Fountain Syndrome
 @FoundationUSP7
21 May

Recently diagnosed? Sign up for our New Family Orientation and Information Zoom Session on June 2! We will record the session so if you can't attend you'll be able to watch it later, but make sure to sign up so you can receive the recording. Sign up here: usp7.salsalabs.org/newfamilyorien…

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FoundationUSP7 Profile Picture
Hao-Fountain Syndrome
 @FoundationUSP7
15 May

Join us this September in Atlanta. Our symposium and family conference will be held on September 24. Now is your chance to hear from leading experts and make connections with other Hao-Fountain Syndrome families. Register today: usp7.salsalabs.org/2024Symposiuma… #haofountainsyndrome #usp7

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FoundationUSP7 Profile Picture
Hao-Fountain Syndrome
 @FoundationUSP7
23 Apr

On Sept 24, we are hosting the Hao-Fountain Syndrome Symposium & Family Conference in Atlanta and have sponsorship opportunities available. This event brings together leading researchers & families affected by Hao-Fountain Syndrome. Questions? Email becky@usp7.org #usp7 #hafous

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FoundationUSP7 Profile Picture
Hao-Fountain Syndrome
 @FoundationUSP7
8 Apr

On behalf of all of us at the Foundation for USP7 Related Diseases and the incredible community we serve, we extend our heartfelt thanks for your unwavering support during Hao-Fountain Syndrome Awareness Day.#HaoFountainSyndromeAwareness #HaoFountainSyndrome #hafous #USP7

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FoundationUSP7 Profile Picture
Hao-Fountain Syndrome
 @FoundationUSP7
7 Apr

A compelling aspect of the Hao-Fountain Syndrome journey, which affects 56% of our community, is the challenge of gastrointestinal (GI) issues. This statistic isn't just a number—it represents real experiences and daily struggles. #HaoFountainSyndromeAwareness #USP7 #raredisease

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FoundationUSP7 Profile Picture
Hao-Fountain Syndrome
 @FoundationUSP7
7 Apr

While not the most prominent feature, epilepsy or seizures manifest in approximately 40% of those diagnosed. This statistic, though not representing the majority, underscores the significant impact seizures can have on the quality of life for individuals & families. #usp7

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