FAST What to Know
 
Welcome FAST Germany - our new global chapter

It is with great joy and anticipation that we welcome FAST Germany into our global family.


Formerly known as the Science and Research pillar of Angelman e.V., FAST Germany emerges as a dedicated chapter under FAST Global.


FAST Germany brings a wealth of experience and dedication to FAST’s mission. With over 700 passionate members and a robust presence in esteemed organizations like Eurordis and ASA (Angelman Syndrome Alliance), they are poised to make an immense impact on the global movement for Angelman syndrome advocacy and research.


Read more about FAST Germany:

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Research Opportunity - Angelman Twins Study - recruiting identical twins

The Angelman Natural History Study is recruiting identical twins for an AS Twin Study. Researchers will compare and contrast data from the Angelman Natural History Study between the siblings.


Goals of the study include: 

  • Find insight into environmental influences on AS
  • Determine if genes outside of UBE3A impact individuals and outcome measures
  • Compare therapies between twins, in order to better understand their effect


If you are the parent or caregiver of identical twins, both living with AS, and are interested in participating, please email: ASNaturalHistoryStudy@childrens.harvard.edu

 
Different Angelman syndrome genotypes

Angelman syndrome is caused by a genetic abnormality on the UBE3A region of chromosome 15, but this problem can take different forms— which is why there are different kinds of AS genotypes. Each type has its own unique genetic make-up and prevalence.


Learn more about the different genotypes:

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First Observational Cross Section Study in Latin America

FAST LatAm was formed in May 2020 and their main project was to launch an Observational Cross Sectional Study in the region to further their goal of laying the groundwork for future clinical trials in Latin America. With hard work and determination, this study has been launched. Learn more about the advancements FAST LatAm is making in their region.


Read more about FAST LatAm:

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What is Angelman Syndrome? Dr. Cesar Ochoa-Lubinoff, PhD

Dr. Cesar Ochoa-Lubinoff, a member of our Scientific Advisory Board, visited his home country of Peru last month. During his time in South America, which was right around Rare Disease Day, he had the opportunity to shed light on Angelman syndrome through several Peruvian media outlets.


Read more about Dr. Ochoa-Lubinoff’s visit to Peru:

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Six children with Angelman syndrome are pictured
FAST - CFC, Charity Navigator Four Star Charity, Candid Platinum Transparency 2023
 
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