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RareEpilepsyNetwork
@RareEpilepsyNet
Landover, MD
Joined March 2015
23
Following
163
Followers
18
Posts
RareEpilepsyNetwork
@RareEpilepsyNet
over 10 years ago
November is National Epilepsy Awareness Month!
#DareTo
Go the Distance with the Epilepsy Foundation! https://t.co/xA6L5QLfWR
RareEpilepsyNetwork
@RareEpilepsyNet
over 10 years ago
Check out our new REN study postcard! We now have 22 patient advocacy organizations working as part of REN!
RareEpilepsyNet
retweeted
KCNQ2 Cure Alliance
@Kcnq2Cure
over 10 years ago
Thank you @ajam for helping raise awareness
#KCNQ2
Epilepsy
@RareEpilepsyNet
@RareDiseases
https://t.co/e8lIc63vPz
RareEpilepsyNet
retweeted
Aarons Ohtahara
@OSohtahara
over 10 years ago
@RareEpilepsyNet
has 1000 enrolled! Ohtahara families keep the momentum going and register with REN.
#EpilepsyAwarenessMonth
Who to follow
Dravet Syndrome Foundation
@curedravet
The mission of DSF is to raise funds for research into Dravet syndrome and related epilepsies, while offering support to patients and families.
stxbp1
@curestxbp1
Non-profit dedicated to ending STXBP1-related disorders, rare neurodevelopmental and epileptic encephalopathies, and spreading awareness of this rare disease.
FOXG1 Research
@Foxg1Research
Parent-led global foundation driving the FOXG1 gene therapy to children worldwide, while accelerating rare disease drug development at large.
RareEpilepsyNetwork
@RareEpilepsyNet
over 10 years ago
Kathryn Jensen, mother of a child with Hypothalamic Hamartoma, urges all affected families to register for REN. https://t.co/laOAu6zW2K
RareEpilepsyNetwork
@RareEpilepsyNet
over 10 years ago
Congratulations to REN's first Amazon gift card winners: Amie Bloom, Maryalicia Verdecchia, Cathy Hoyda, Sondra Tasker, and Karin Kilpatrick
RareEpilepsyNetwork
@RareEpilepsyNet
almost 11 years ago
The American Epilepsy Society (AES) accepted two research posters from REN to be presented at 2015 annual AES meeting in Philadelphia, PA!
RareEpilepsyNetwork
@RareEpilepsyNet
almost 11 years ago
Win an Amazon gift card from REN in September 2015! https://t.co/PTyojYMrxq
RareEpilepsyNetwork
@RareEpilepsyNet
almost 11 years ago
Kristin Frausto, a Tuberous Sclerosis Alliance constituent, discusses the REN: https://t.co/fLt0YsqDHc.
RareEpilepsyNetwork
@RareEpilepsyNet
almost 11 years ago
Karen Groff, a Lennox-Gastaut Syndrome Foundation constituent, discusses the importance of registering for the REN: http://t.co/IKCzxuaE7N
RareEpilepsyNetwork
@RareEpilepsyNet
almost 11 years ago
Lisa Soeby, Co-Founder of Hope for Hypothalamic Hamartomas, discusses the importance of registering for the REN: http://t.co/TFGgv470ZO.
RareEpilepsyNetwork
@RareEpilepsyNet
almost 11 years ago
Register for this upcoming webinar about epilepsy, anxiety, and mood changes, hosted by the Epilepsy Foundation: http://t.co/xwJ0cozpzP.
RareEpilepsyNetwork
@RareEpilepsyNet
about 11 years ago
A parent of a son with a rare epilepsy explains why she participated in the Rare Epilepsy Network registry. http://t.co/PAfKM4N9bv
RareEpilepsyNetwork
@RareEpilepsyNet
about 11 years ago
Epilepsy has been found to reduce the generation of new neurons. http://t.co/reAg8anHz9
RareEpilepsyNetwork
@RareEpilepsyNet
about 11 years ago
Be sure to catch a Twitter chat about mental health sponsored by
@PCORI
tomorrow, May 19th from 3-4 pm Eastern. Use
#MHTalk
to join.
RareEpilepsyNetwork
@RareEpilepsyNet
about 11 years ago
We have reached an enrollment of 600! We are almost halfway to our goal. Won't you help us reach it?
RareEpilepsyNetwork
@RareEpilepsyNet
about 11 years ago
Our new REN buttons are in!
RareEpilepsyNetwork
@RareEpilepsyNet
about 11 years ago
The Rare Epilepsy Network (REN) is currently recruiting for its rare epilepsy study!
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