March is 31 days. Having a disability? 24/7, 365. REN is excited to kick off the March disabilities awareness campaign that reminds everyone that “We’re Here All Year.” Opportunities for people with developmental disabilities should be recognized and championed. NACDD

This Friday, get to know two REN members doing amazing work for their communities on our Blog page rareepilepsynetwork.org/blog. This week, the KdVS Foundation and The Foundation for Angelman Syndrome Therapeutics leaders shared what they are especially proud of.

Joining REN connects you to 150+ leaders of communities affected by rare epilepsy. REN is here to support the supporters and share ideas, learnings, and education. Visit rareepilepsynetwork.org/members-partne… to check out our members and partners and join.

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?l…

When rare siblings become rare leaders, so inspiring! Happy National Siblings Day! See this Instagram post by @dup15qalliance instagram.com/p/DIQ-sT1pOKS/…

Join Pediatric Epilepsy Surgery Alliance if you serve children who are anywhere on the epilepsy surgery journey; join on Tuesday, April 15 at 1 PM EDT for an honest and validating conversation about medical trauma—what it is, how it affects both children and caregivers, and what can be done to heal.

Power Hour: Making It to Monday – A Conversation on Medical Trauma, Resilience, and Community tockify.com/ren.calendar/d…

The majority of REN member organizations were created by volunteers, and volunteers are their engine! This Volunteer Appreciation Week, take a moment to thank those hero volunteers who have genuinely been changing the odds for those with rare epilepsies and inspiring others!

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/relation…

People with epilepsy often experience higher rates of depression and anxiety. May is Mental Health Awareness Month, help REN spread awareness and support to those in your life.

Don't miss the May 2025 Rare Epilepsy ROUND UP wix.to/JX9Puiz

Ana Rita Moreira of the REN member vatpasealliance shared her moving advocacy story, "Don't Let the Light Go Out," with the Epilepsy Foundation of America Foundation Quarterly Spring 2025. The energy and determination of their community is contagious. flipsnack.com/epilepsyfounda…

Caregiver‐reported meaningful change in functional domains for individuals with developmental and epileptic encephalopathy: A convergent mixed‐methods design onlinelibrary.wiley.com/doi/10.1111/dm…

Love seeing meaningful change being captured in DEE! Check out this new publication from this powerhouse collaboration.

May/June REN members and partners have been super busy, check out the June 2025 REN Newsletter. rareepilepsynetwork.org/so/9ePTM4NjV?l…

June 2025 Rare Epilepsy ROUND UP wix.to/2N8uiAV

🗓️ Mark your calendar! Our next Members Only REN Meeting is June 30th at 1 pm ET. Not a member? Join over 150 rare epilepsy leaders! Learn more & join REN: 🔗 rareepilepsynetwork.org/members-partne… #RareEpilepsy #Advocacy #Community #GeneticTesting #REN

#SponsoredPartnership  The STARS study is looking for people with focal or generalized epilepsy (or a combination of the two) with seizures regularly lasting 3 minutes or more. To find out the eligibility criteria, please visit starsepilepsystudy.com

Today we stand together with the Global Start Genetic movement, a new annual effort to improve access to genetic testing. A Parent Toolkit is also available here: cureshank.org/start-genetic#… Who else is joining us? 🙋‍♀️ #StartGenetic

#SponsoredPartnership Are you a caregiver for someone with focal or generalized epilepsy (or a combination of the two) seizures frequently lasting 3 minutes or more? To learn about an investigational drug being studied for the study, visit starsepilepsystudy.com