March comes in like a lion ... ringing true for anyone else?  Save the date for our REN MEMBERSHIP meeting on March 29th at 2 PM ET with an informal chat starting at 1:30 PM ET.  Get to know REN members, check out conferences for you and your constituents, catch up on great events you may have missed. Share your research grants on the ERC and continue to promote the REN Registry.  Share this newsletter with your researchers, industry partners, clinicians, and others. 

Get To Know REN Members

Learn more about Coalition to CURE CHD2 and FoxGI Research Foundation. Submit YOUR organization's journey here. Welcome NEW members Ring14 International and Lightning & Love Foundation (THAP12).  

In other MEMBER news, shout out to CC Leader Kris Pierce for an article in the Herald Sun (behind a paywall) about her family's rare disease journey. Congrats to Betsy Pilon as the new Executive Director of HOPE for Hie.  Check out a Rare Disease Video from SGS Foundation is here. And KCNA2 has a new website. Stories in the news? Please share with info@rareepilepsynetwork.org.

#RareEpilepsies Join Forces on 2/28

Great seeing so many #RareEpilepsies come together for Rare Disease Day. Shout outs to upcoming Rare Days. Show other REN MEMBERs some love. Add your awareness days here.  Thanks Leah Schust for starting this list!

• Mar World PVNH Disorder Awareness Month
• Mar GRIN Awareness Month
• 3/1 KCNQ2 Awareness Week
• 3/15-21 Grin2B Awareness Week
• 3/19 CACNA1A Awareness Day
• 3/20 International CHAMP1 Awareness Day

Mark Your Calendars

A list of meetings for Rare Leaders and your constituents follows to attend and promote: 

• 3/16-28 EF Public Health Institute is open for registration: HERE. This virtual conference provides EF network staff and partners increased skills and resources to deliver and apply public health principles that benefit people with epilepsy. The conference was built with the 10 Essential Public Health Services as a guide. The Public Health Institute is open to all leaders that work in public health, including:   program staff that provide education, Information & Referral, Diversity & Equity initiatives, Communication and Marketing staff and Executive Directors. Session including Rares on Wednesday at 1 PM ET. 

• 3/22 CURE Epilepsy presents Women's Health: Complex Interactions of Epilepsy, Medications, and Hormones. Register here. 

• Everylife Foundation & Global Genes Rare on the Road Save the Dates - 3/23, 5/1 (Las Vegas, NV), 5/15 (Miami, FL), May 22 (Chicago, IL) 
• 3/25 - O'Donnell Brain Institute Annual Symposium - Autism Spectrum Disorders
• 3/26 Purple Day led by the Anita Kaufmann Foundation -  more information and initiatives here.
• 4/8-9 Epilepsy Foundation Research Roundtable for Epilepsy (RRE). Although the meeting is closed, the ELC is included as an advisory committee organization, and will be represented by ELC members (and rare advocates) Vanessa Vogel-Farley, Heidi Grabenstatter and Gabi Conecker and we hope to obtain a report back. Findings from the meeting will be shared in a peer-reviewed academic journal.

• 4/17: Epilepsy Learning Healthcare System (ELHS) virtual spring Learning Session. ELHS includes 9 rare epilepsy organization partners among its membership of clinical and community teams, which work together to improve outcomes for all people with epilepsy. To learn more, contact elhs@efa.org
• 4/17-4/22 American Academy of Neurology Virtual Annual Meeting. 
• 6/16-18 AntiEpileptic Drug & Device Trials XVI registration here. Working to negotiate a rare discount. 
• 6/26-27 NORD's The Living Rare Forum is seeking speakers. 
• 9/29-10/2 50th Annual Child Neurology Society (CNS) meeting 

Any other broad 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. Recent posts and invitations from SCN2A, Norse and others are most appreciated. 

In Case You Missed These Great Events

Awesome talks to watch and share: 

• Orphan Disease Center's Rare Disease Day talks are a must see - especially those by Drs. Berg and Demarest. Listen here.  
• Rare Disease Day at NIH presentations were spot on. Listen here. 
• Did you miss the Candid Conversation with LGS & Dravet Leaders. You can watch it here. 
• PAME webinar on Learning from Loss here. 

News You Can Use

FDA Safety Warning on Cardiac Effects of Lamotrigine. Read an Advisory from the Ad Hoc ILAE/AES Task Force here. 

REN cited in an article titled "Indiana Family's Experience with Rare Epilepsy May Help Other African Americans here. 

In case you missed it, $30M invested in Australian Epilepsy Project. Read about it here. 

World Leading Children's Hospitals Partner to find new treatments for pediatric diseases. The first project is epilepsy in infants. Read more here. 

New Neonatal Seizure Class-action from ILAE here. 

Articles that might be of interest -  Study Maps Key Proteins Linked to Epilepsy, Revealing New Drug Targets here. Epilepsy Currents: Can EEG Abnormalities be a Biomarker for Epileptogenesis here. 

AES has a new website - check it out here. Plus grants for your orgs, researchers and conferences have a 3/24 deadline here. 

News to share? Contact info@rareepilepsynetwork.org. 

Advocating for Epilepsy & Rares 

The Rare Disease Diversity Coalition (RDDC) launched with an exceptional program on Feb. 23. Check out the event here. Read the Coalition's report overviewing challenges faced by rare disease patients from underserved communities. And visit the website to learn more and get involved here. 

Also, REN signed onto letters recently including:

1. TSA's led initiative to Prioritize Rare Disease Patients and Caregivers for COVID-19 Vaccines. 
2. American Heart Association, American Lung Association & Epilepsy Foundation supporting $3.75B inFY2022 for CDC's National Center for Chronic Disease Prevention and Health Promotion. 
3. American Public health Association $10B for CDC FY2022 appropriations. 
4. Seizure Action Plan Coalition letter for Seizure Safe School Legislation for VA and many other States.

Got Research Grants? Looking for Data? 

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Rare Epilepsy Network (REN) working with urgency

to collaboratively improve outcomes of rare epilepsy patients and families

by fostering patient-focused research and advocacy.