May/June REN members and partners have been super busy, check out the June 2025 REN Newsletter.
rareepilepsynetwork.org/so/9ePTM4NjV...
May/June REN members and partners have been super busy, check out the June 2025 REN Newsletter.
rareepilepsynetwork.org/so/9ePTM4NjV...
Last call for AES 2025 Abstracts! Make your research seen at THE epilepsy conference.
09.06.2025 13:37 — 👍 1 🔁 1 💬 0 📌 0
@Ana Rita Moreira of the REN member @vatpasealliance.org shared her moving advocacy story, "Don't Let the Light Go Out," with the @Epilepsy Foundation's Foundation Quarterly Spring 2025. The energy and determination of their community is contagious.
www.flipsnack.com/epilepsyfoun...
REN partner DEE-P Connections is putting on a webinar about a very important topic! Marriage and Parenting a Medically Complex Child. TONIGHT! deepconnections.net/event/relati...
22.04.2025 17:34 — 👍 1 🔁 0 💬 0 📌 0
The majority of REN member organizations were created by volunteers, and volunteers are their engine! This Volunteer Appreciation Week, we want to take a moment to thank those volunteers who have genuinely been changing the odds for those with rare epilepsies and inspiring others! They are heroes!
21.04.2025 14:40 — 👍 1 🔁 0 💬 0 📌 0
REN's March/April 2025 Newsletter is out, including a new "Washington Watch" Section to help navigate the changes and suggest actions to elevate our voices in this crucial time! rareepilepsynetwork.org/so/78PNSraUo...
10.04.2025 13:20 — 👍 1 🔁 0 💬 0 📌 0
Joining REN connects you to 150+ leaders of communities affected by rare epilepsy who know there is very little training to be an advocacy leader. Visit www.rareepilepsynetwork.org/members-part... to check out our members and partners and join.
17.03.2025 20:13 — 👍 1 🔁 0 💬 0 📌 0
Allison Moise, BSW, our Peer Support Coordinator, is at the National Epilepsy Walk and a part of the first cohort of epilepsy research ambassadors going through training today!
She ran into Ilene Miller from @rareepilepsy.bsky.social today, too!
#NeuroSky #Epilepsy #Advocacy
This Friday, get to know two REN members doing amazing work for their communities on our Blog page. www.rareepilepsynetwork.org/blog. This week, the Koolen-de Vries Syndrome Foundation and Foundation for Angelman Syndrome Therapeutics leaders shared what they are especially proud of.
07.03.2025 14:08 — 👍 0 🔁 0 💬 0 📌 0
Illustration of the "Meet Us, Know Us" initiative, promoting relationships and collaboration among diverse community members.
Illustration of the "Meet Us, Know Us" initiative, promoting relationships and collaboration among diverse community members.
Community, accessibility, and opportunities for people with developmental disabilities should be recognized and championed every day—not just in March.
Share Now: forms.office.com/r/FP6KbAV8MS
Meet us, know us, involve us.
#WeReHereAllYear #NACDD #DDAwareness
On this Rare Disease Day we share the story of Charlotte's epilepsy journey with v-ATPase.
To learn more about Charlotte’s diagnosis, please visit www.vatpasealliance.org @vatpasealliance.org
REN's members and partners are out there celebrating Rare Disease Week. Check out some of the amazing activities these movers and shakers are undertaking. www.rareepilepsynetwork.org/so/ccPKRNuQo...
27.02.2025 16:47 — 👍 0 🔁 0 💬 0 📌 0
Spread the word!! and Alternative Event for Rare Disease Day in DC! Thank you to Worldwide Clinical Trials for providing this opportunity! www.linkedin.com/posts/worldw...
27.02.2025 14:37 — 👍 2 🔁 0 💬 0 📌 0
Rare Disease Day is coming up on Friday! The Rare Epilepsy Network is so proud to have so many advocates out there celebrating this week in their countries, cities, states, and capitals! Please celebrate with us by spreading the word!
25.02.2025 20:38 — 👍 2 🔁 0 💬 0 📌 0Rare Epilepsy Advocates headed to DC this week for Rare Disease Week events; there will be a casual meet-up on Wednesday, Feb 26, 2025 starting around 5:30pm (est) at Logan Tavern, 1423 P St NW, Washington, DC 20005, USA. Connect with Ilene Penn Miller if you need more details or plan to go!
25.02.2025 03:57 — 👍 3 🔁 1 💬 0 📌 0
Key Discussion Topics:
• What are the most critical economic impacts on caregivers?
• How do these impacts differ across various patient and caregiver contexts?
• What gaps exist in current research, and how can we address them?
app.glueup.com/event/the-ec...
This week is Seizure Action Plan Awareness Week! Don't delay – take control of your health today by creating your Seizure Action Plan! Download your SAP today, available in seven different languages: sprout.link/epilepsyfdn?...
13.02.2025 15:05 — 👍 1 🔁 2 💬 0 📌 0
Today we Celebrate International Epilepsy Day & The Rare Epilepsies! This day encourages everyone, regardless of how they are affected by epilepsy, to advocate for global human rights for people living with epilepsy. www.rareepilepsynetwork.org
10.02.2025 15:31 — 👍 3 🔁 3 💬 0 📌 0
We’re thrilled to introduce this year’s @ODC_UPenn's Genetic Counseling Student Exchange (GCSX) participant from the Penn Medicine Genetic Counseling Program. Over the next 10 weeks, they'll be working on advocacy projects for REN @odc-upenn.bsky.social
06.02.2025 20:21 — 👍 2 🔁 1 💬 0 📌 0
TODAY, 3pm EST "Growing Together: Navigating the Life Stage Checklist for Families." Register here:
us02web.zoom.us/webinar/regi...
Join us Feb 6, 2025 2pm CST for an empowering and informative webinar, Growing Together: Navigating the Life Stage Checklist for Families.
us02web.zoom.us/webinar/regi...
REN members/partners have some exciting events! Today, our partners at DEE-P Connections are hosting a webinar 'Making sure every inchstone of progress is measured – Update on The Inchstone Project." register deepconnections.net/events/.
All REN Events
www.rareepilepsynetwork.org#:~:text=Cale...
Are you looking for an opportunity/job in the rare epilepsy space? Several REN members/partners have openings. Check them out here!
docs.google.com/spreadsheets...
Check out our upcoming event, Growing Together: Navigating the Life Stage Checklist for Families.
us02web.zoom.us/webinar/regi...
REN would like to acknowledge and thank our 2024-2025 Interns working behind the scenes to develop content and new tools for REN and other partners. Thank you! www.rareepilepsynetwork.org/post/ren-s-2...
23.01.2025 16:17 — 👍 1 🔁 0 💬 0 📌 0Many REN members and partners are seeking candidates for various roles, from marketing to executive director to science/research officers. Sign up to have your information and skills shared with the 150+ organizations that are part of REN here. forms.gle/2kPDy7MNnZj5...
22.01.2025 13:45 — 👍 0 🔁 0 💬 0 📌 0
The Curse of Stigma is more than a documentary! The stories in the film empower people to speak out, to tell others that epilepsy is treatable, and that there should be no shame. Watch The Curse of Stigma Film at: thecurseofstigma.org
17.01.2025 18:41 — 👍 0 🔁 0 💬 0 📌 0
Join our partners at AGENDA (Alliance for Genetic Etiologies in NeuroDevelopmental Disorders and Autism) at their upcoming meeting. AGENDA is lucky enough to have Wendy Chung from BCH speak on Newborn Screening.
us06web.zoom.us/meeting/regi...
We recently got an amazing compliment that our newsletter was one of the most informative in the epilepsy space! Check out our website to sign up to receive it! www.rareepilepsynetwork.org
13.01.2025 18:53 — 👍 0 🔁 0 💬 0 📌 0We are thinking about all of the families who are affected by rare epilepsies who are being displaced by the wildfires in California. Our thoughts are with you!
09.01.2025 21:15 — 👍 0 🔁 0 💬 0 📌 0