SHARE:  
FAST What to Know
 
FAST joins the FDA/FNIH Workshop Panel Discussion

FAST was invited by the FDA to join an advocacy-based panel discussion at the 2024 Joint FDA / FNIH Workshop for Digital Measures: Navigating the Development of a Digitally Derived Endpoint.


Learn more about the panel:

Learn more
 
FAST Germany Annual Parent Meeting

We are thrilled to share the incredible success of the annual parent meeting of the Angelman Verein e.V. and FAST Germany. Congratulations to the entire board for the impeccable organization and a special thanks to Holger Müller (president of the Angelman Verrein e.V.) and Evelin Dietrich (president of FAST Germany) for inviting FAST HQ. The event was truly special, with 240 attendees, including 55 individuals with Angelman syndrome and 36 siblings.


Seeing so many individuals living with AS gathered in one place was heartwarming.


Read more and check out photos from the meeting:

Read more
 
An update from FAST and ASF

The ASF and FAST recently joined other rare disease groups to direct the Food and Drug Administration (FDA) to establish a Rare Disease Center of Excellence through the the Agriculture, Rural Development, Food and Drug Administration and Related Agencies Fiscal Year 2025 appropriations bill. Report language in this bill would ask FDA to create an Intercenter Institute for Rare Diseases that will serve as a cross-cutting, capacity-building, collaborative hub for rare disease activity at the FDA.


We are proud to support such important initiatives in the rare disease space.


Read more:

Read more
 
FAST Global Science Summit & Gala Scholarship: Winners will be announced on Friday, June 28th

Did you apply for our FAST Global Science Summit & Gala Scholarship? We had over 100 scholarship applications and will be announcing the winners on June 28th so be sure to check your email inbox!


For those who are in need of financial assistance to attend the 17th Annual FAST Gala on Saturday, November 9, we encourage parents or grandparents to apply for our FAST Gala Ticket Giveaway, which opens July 1st.


We hope these affordability programs help remove some financial barriers for our community to attend this inspiring weekend.


Learn more about the 2024 Global Science Summit & Gala:

Learn more
 

Thanks for reading, and please share this email with anyone in your network who would be interested in receiving our updates.

Six children with Angelman syndrome are pictured
CFC, Charity Navigator 4 stars, and Candid Platinum Transparency
 
Facebook  Instagram  LinkedIn  Twitter  YouTube