SARE Largay

Positive, practical dreamer. Mom, wife, daughter, friend, athlete, animal lover. Devoted to making a difference in the world for rare diseases.

[Christian Schaaf @cpschaaf]

New insight on Hao-Fountain syndrome: clinical severity score, genotype-phenotype correlations and expansion of phenotypic spectrum. @FoundationUSP7 @bcmgenetics @bcmhouston @UniHeidelberg @uniklinik_hd
https://t.co/iFlQMvY15B

[SARE Largay @sarelargay]

@cpschaaf @bobigelow @FoundationUSP7 @bcmgenetics @bcmhouston @UniHeidelberg @uniklinik_hd This is amazing! Thank you for your dedication to this research. Another grateful family member here.

[SARE Largay @sarelargay]

@gabizambranoMD @KottonNelson Just popped up in my Twitter feed

[SARE Largay @sarelargay]

@Melissassmile I am SO thrilled to see this!! AmazIng work to advocate for this community. I am so happy for you. So incredibly well deserved.

[SARE Largay @sarelargay]

Learning just a little more every day. Thank you to all the researchers out there that give hope to families living with #HaoFountainSyndrome and other #rarediseases.

[Hao-Fountain Syndrome @FoundationUSP7]

According to the most recent research 73% of those diagnosed with Hao-Fountain Syndrome have an abnormal brain MRI. #haofountainsyndrome #haofountainsyndromeawareness #usp7 #fixthedimmerswitch #raredisease

[SARE Largay @sarelargay]

Way to go @bobigelow ! So deserved for all that you do for #haofountainsyndrome #usp7

[Hao-Fountain Syndrome @FoundationUSP7]

Congratulations  to our very own Bo Bigelow! #haofountainsyndrome #ourrockstar

https://t.co/DNuZPKsMku

[Takeda @TakedaPharma]

This National Organ Donor Day, our team reflects on the purpose of improving the lives of #transplant community members. We’d like to thank those working to improve the lives of brave transplant donors and recipients. To learn more visit: https://t.co/UrW0h2Tg8C #organdonation

[Takeda @TakedaPharma]

Excited to announce that we launched a #CMV education website that provides transplant patients and their care partners with information to help throughout their journey, from understanding exposure to CMV through post-transplant recovery. Learn more: https://t.co/hQRKAePEWp

[Bo Bigelow @bobigelow]

Life with this disease can be pretty overwhelming for families. Especially on that day you first get your diagnosis. If that's you, and this is that day, you've come to the right place. #USP7 #HaoFountainSyndrome https://t.co/rA15y90jjB

[SARE Largay @sarelargay]

@AST_IDCOP @MichaelGIsonMD Congratulations @MichaelGIsonMD !

[SARE Largay @sarelargay]

@Bob_Wachter Heartbreaking

[Takeda @TakedaPharma]

We are thrilled to announce that Takeda received @US_FDA approval for an antiviral treatment option for transplant patients. We are eager to support those in this underserved patient population. Read our press release here: https://t.co/gwDc94xunZ #FDA #InnovationAtTakeda

[SARE Largay @sarelargay]

Butterflies: MLD Patient Story https://t.co/RQpMWLLLi2 via @YouTube

[SARE Largay @sarelargay]

Take Action | RareAction Network https://t.co/pBfDSt2RkY

[Bo Bigelow @bobigelow]

We are *this close* to getting patient 100, having found 98 and 99 this week. Can you help us get there? Please read this thread and RT! #USP7 #RareDisease #HaoFountainSyndrome #FixTheDimmerSwitch #ProjectArtemis @FoundationUSP7

[IFOPA @ifopa]

When malformed big toes are seen along with unexplained swellings, it's a clear indication of FOP. #cureFOP #raredisease

[Tin Soldiers FOP @fop_tin]

Love and pride shine through for Kaylen and her dad. Every 44 hours a baby is born with FOP. Are you a rare parent? Help us find the missing!

#fopchallenge #raisealegforfop #helpusfindthemissing #tinsoldiersfoppatientsearch #raredisease #CareAboutRARE #rareparents #raredads

[Takeda @TakedaPharma]

In celebration of National Cytomegalovirus (CMV) Awareness Month, we stand with the strong community of those working together to further bring to light this common, yet rarely discussed, virus. #CMVAwarenessMonth #StopCMV

Intended for a global audience outside of the UK.

[SARE Largay @sarelargay]

#cureFOP #DonateLifeMonth Thank you Ollie for your gift to others.

[IFOPA @ifopa]

There couldn't be a more fitting post for today. Ollie, who lived with FOP, fell from his wheelchair and experienced a catastrophic brain injury. He passed away, but not before becoming an organ donor for 3 families. Our entire community feels the pain; we are a family. #cureFOP