February is Rare Disease Day.  Save the date for our REN MEMBERSHIP meeting on Feb. 22 at 2 PM ET with an informal chat starting at 1:30 PM ET. Get your personalized badge and help PR #RareEpilepsies as a part of #RareDisaeseDay. Conferences for you and your constituents. 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. 

Promote #RareDiseaseDay & #RareEpilepsies on Feb 28

Get YOUR personalized #RareEpilepsies badge here and share it on Feb. 28th to show how your organization is part of the #RareEpilepsies and the broader #RareDiseaseDay community. Also shout outs to upcoming Rare Days. Show other REN MEMBERs some love. Add your awareness days here.  Thanks Leah Schust for starting this list!

• 2/7 CHD2 Awareness Day
• 2/7 PACS1 Syndrome Awareness Day 
• 2/8 International Epilepsy Day & Seizure Action Plan Awareness Week
• 2/9 International SCN8 Awareness Day: Wishes For Elliott, Shay Emma Hammer Research Foundation, The Cute Syndrome Foundation
• 2/15 Angelman Awareness Day
• 2/24 International SCN2A Awareness Day: Families SCN2A
• 2/28 Rare Disease Awareness Day
• Mar World PVNH Disorder Awareness Month
• Mar GRIN Awareness Month
• 3/1 KCNQ2 Awareness Week
• 3/19 CACNA1A Awareness Day
• 3/20 International CHAMP1 Awareness Day

Stay Abreast of Key Conferences, Meetings & More

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

• 2/10 Join Child Neurology Foundation for a webinar on Age-Appropriate Behavior Management: Strategies to Address Difficult Behaviors in Children with Neurologic Conditions. Register FREE here. 
• 2/10-12: Epilepsy Foundation Virtual Leadership Conference on Digital Fundraising & Marketing
• 2/10 Webinar with Daniel Fisher from Tevard Biosciences - father of a child with Dravet Syndrome and the journey of starting his company. Contact Nasha Fitter to join. 
• 2/16 Join a Facebook Live candid discussion with Tracy Dixon Salazar of Lennox-Gastaut Syndrome  and MaryAnne Meskis of Dravet Syndrome in partnership with Epilepsy Foundation here. 
• 2/19 REN is pleased to join AGENDA & COMBINED BRAIN for a webinar, A Genetics First Approach to Understanding ASD. Dr. Samuel Chawner is going to spend about 20 minutes describing and providing his interpretation of the findings of an analysis comping the behavioral phenotypes related to ASD and cognitive ability in 4 different genetic syndromes to idiopathic autism.  Please bring your questions, your doubts, your ideas and your suggestions for using this approach.  It is open to the public, registration is FREE but you need to register here. 
• 2/23 Join the Rare Diversity Diversity Coalition (RDDC) to learn more about this initiative convening industry, advocacy and community leaders to reduce racial disparities in the rare disease community. Details to follow. 
• 3/2 Join Orphan Disease Center for Rare Disease: Patients: Patients The Heroes of Rare Disease. Drs. Anne Berg and Scott Demarest will be among the speakers recommended by REN discussing how patient interactions have influenced their practice.  Register here. 

• 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.  

• 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
• 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
• 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. 

Activate Your Voice for Rares

Kudos to Dravet Syndrome Foundation, Lennox-Gastaut Syndrome Foundation and Tuberous Sclerosis Alliance for leading a Seizure Action Plan Coalition to raise awareness of Seizure Action Plans. Get the toolkit and messaging here. #SAPAW2021 runs Feb. 8-14

Congrats to Brain Recovery Project on the first report from their Global Pediatric Epilepsy Surgery Registry here. 

Join our partner AGENDA in disseminating the CARING through COVID survey  to learn about the continued experiences of families after many months of virtual learning and online therapeutics. The new survey will take 10-20 minutes to complete. The survey is intended both for individuals who completed the previous version as well as new participants- it is being conducted to better understand how families are doing 10 months after the pandemic started, which may be the "new norm".  The results will be used to develop better services for families with rare diseases.  https://uclahs.az1.qualtrics.com/jfe/form/SV_a3LEHBT7SbtlnQV

Check out Cure's Podcast - Epilepsy Drug Development: Clinical Trials - A Patient's perspective with Kim Nye.

Watch the premiere of #CelebratingCaren on 2/26, a movie about the life of a 65 year old SynGAP patient.  

Watch Behind the Mystery - a Rare Disease Day Special on Lifetime on 2/24 from The Balancing Act.  

News to share? Contact info@rareepilepsynetwork.org. 

REN Advocates for Policies to Support Rare Research & Families 

REN signed onto 3 advocacy letters recently including:

1. REN joined an AES request to FDA for more information and dialogue re: a recent Lamotrigine warning.  See the statement from AES/ILAE here. 
2. REN joined EF and other patient advocacy groups in calling for rescission of Six Protected Classes Demonstration and protection of Access to Anticonvulsants here. 
3. REN joined the Ad Hoc Group for Medical Research in support of  least $46.1 billion for the NIH in FY 2022, a $3.2 billion increase, or an increase of BRDPI + 5% (7.4%), over the FY 2021 program level.

Got Research Grants? Looking for Rare Epilepsy Data? 

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Share news, information and more to info@rareepilepsynetwork.org

Rare Epilepsy Network (REN) working with urgency

to collaboratively improve outcomes of rare epilepsy patients and families

by fostering patient-focused research and advocacy.