@projectfava

Project FAVA: nonprofit working to drive medical research to treat the painful fibro adipose vascular anomaly, a rare disease connected to the PIK3CA mutation.

projectfava.org
Joined July 2019
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  • Following27
  • Followers75
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Fantastic news today for patients with PIK3CA related disorders (PROS)! Alpelisib obtained FDA approval. This is for us a fantastic achievement. We started in 2016, identified alpelisib (BYL719) has a promising compound and developed a mouse model. 1/n fda.gov/drugs/resources-info…
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What do you know about FAVA? Click to find out what you should know from the real experts: those suffering from it. #RareDisease #RareDiseaseDay @rarediseaseday @rarediseasesint @RareDiseases @GlobalGenes
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proserarediseaseday.kudoboar… #RareDiseaseDay love for those living with FAVA and other PROS conditions

Post a meaningful message to PROS patients everywhere. | Kudoboard

Kudoboard empowers users to celebrate the moments that matter.

proserarediseaseday.kudoboard.com
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Sirolimus Leads to Rapid Improvement in Fibroadipose Vascular Anomalies @ISSVA_org #FAVA
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NORD is proud to announce the launch of the COVID-19 Critical Relief Program for #raredisease community impacted by #COVID19. The program supports patients & families facing financial challenges & helps with essential non-medical expenses. Read more: rarediseases.org/nord-launch…

NORD Launches Financial Assistance Program for Rare Disease Community Members Impacted by COVID-19...

Washington, DC, April 15, 2020— At this time of crisis and with the health, safety and well-being of patients and caregivers as its top priorities, the

rarediseases.org
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Project FAVA youtu.be/omZr-IeoYzA via @YouTube

FAVA: A Journey to Diagnosis

This is the story of one child's struggle to obtain a diagnosis of ...

youtube.com
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We believe in a #PainFree future for all people living with FAVA. Do you? projectfava.org

Project FAVA | Fibro Adipose Vascular Anomaly

Project FAVA is a nonprofit patient advocacy organization dedicated to education re: fibro adipose vascular anomalies and driving research toward effective treatments for FAVA.

projectfava.org
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