Kicking off August with a few congrats to members of our community and a grant opportunity.
Congrats to Charlene Son Rigby recently named the CEO of Rare-X. Charlene co-founded the STXBP1 Foundation and is a valued member of the rare epilepsy community. Read more here.
Three cheers to Alison Kukla who is receiving the International Bureau for Epilepsy's Golden Light Award. Read more here.
CDC epilepsy grants have been announced -kudos to Epilepsy Foundation plus AES/Dartmouth, Epilepsy Association of Western and Central PA, EF New England, National Association of Nurses (NASN).
Is your community affected by infantile spasms? ISAN has 2 grants for ISAN members. Become an ISAN member and/or apply for the grant here.
As always - member blogs, upcoming conferences, rare disease awareness days, and news follows!
Increasing Awareness of YOUR Organizations.
REN looks for opportunities to increase awareness of our member organizations with other stakeholders. See an article re: REN in Rae Genomic Institute's July newsletter here.
Recruiting for Research & Key Opinion Leaders.
Help recruit patients and caregivers for academic research and other opportunities to give voice to rares as key opinion leaders at critical stakeholder tables. Opportunities follow for YOU and your constituents.
NEW -- Consider participating in a confidential survey led by researchers at University of British Columbia.
This initiative seeks to help researchers understand parent and caregiver decision-making around neurotechnologies like VNS, DBS and others.
NEW--The Epilepsy Genetics Research Program at Toronto Western Hospital invites REN members to participate in a study that aims to understand the adult outcomes of developmental and epileptic encephalopathies. We are looking for patients (18 years+ old) who have epilepsy caused by: STXBP1, SCN2A, SCN8A, PCDH19 and CHD2.
To learn more, please watch our video explaining our study.If you wish to participate, please contact our Research Coordinator, Marlene Rong at marlene.rong@uhnresearch.ca.
Help Sydney Children's Hospital Network clinical genetic epilepsy and neurogenetics research group disseminate a short survey to your US and international patient/caregiver community networks to gather feedback on videos developed to provide psychosocial support to parents of children with genetic epilepsies.
Toronto Western Hospital Epilepsy Genetics Research Program invites REN members to participate in a survey on “Perception of transition from pediatric to adult healthcare system in patients with epilepsy” headed by Dr. Danielle Andrade at the Toronto Western Hospital.
10/18-19 NORD Rare Disease & Orphan Products Breakthrough Summit here
12/3-7 AES 2021 Chicago, IL. Register here for a booth in Epilepsy Resource Area
Any other conferences on your radar? Please share with info@rareepilepsynetwork.org. Also, got a conference for your specific diagnosis? Want to invite colleagues from other PAGs to observe? Feel free to post information/invites on REN Google Groups list-serve. Send a message to: ren-rare-epilepsy-network@googlegroups.com
#RareEpilepsies - Awareness Days.
Shoutouts to upcoming Rare Days including REN Member PVNH Support's World PVNH Awareness Day on August 7th and Project 8p's Chromosome 8p Day. Show other REN MEMBERs some love, and support #RareEpilepsies! See events that each organization is hosting. Add your awareness days here.
The REN registry includes data for 1459 patients across 40 diseases!
Help promote the REN registry data to your researchers and clinicians.
Your outreach is important whether your disease participated in the original registry or not.
Download the Registry Tool Kit and images and help spread the word via email, newsletters and social media!
The Epilepsy Research Connection (ERC) is a repository of epilepsy research funding opportunities from non-profit and government organizations. Investigators can also register to receive new funding announcements. If your organization is interested in posting a grant notice on the Epilepsy Research Connection, please contact info@epirc.org for instructions.
