Kicking off April with congrats to Karen Utley, BSN, RN, President & Co-Founder, International Foundation for CDKL5 Research and Rachel Patterson, MPA, Senior Director, Federal Relations & Policy Epilepsy Foundation who were voted in as REN's new Coordinating Committee members. Sincere thanks to Kathleen Farrell whose term has concluded and Chair, Yssa DeWoody, who will serve as Chair, Ex Officio. Get to know REN's CC here. Praise to Nora Wong and Bo Bigelow - two NORD Rare Impact Awardees. Join the celebration is on June 26th. Also, shout out to Kari Luther Rosbeck for her recent episode on Norpod - The Voice of Rare Disease. An incredible journey, advocate, and a must listen here. Thank you for the REN shout out too. Spring has sprung! With gratitude, The REN Coordinating Committee PS: REN Members save April 25th for the next REN Members ONLY meeting. |
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STEP UP & ACTIVATE YOUR COMMUNITY |
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Looking key ways to engage in epilepsy research, advocacy and policy? Consider these opportunities to share insights from you and your constituents... - If your community has NDD and gastrointestinal issues, consider promoting this survey to your constituents from our friends at CANDID (Consortium for Autism, Neurodevelopmental Disorders & Digestive Diseases). This effort is led by several rare epilepsy leaders who straddle NDD, epilepsy, and autism.
- Join a Task Force as part of Epilepsy Leadership Council's landscape Analysis initiative. Advocates can sign up for one of six task forces. Separately, ELC is soliciting advocates to serve on the Curing the Epilepsies Benchmark Committees. To learn more about each of these initiatives, contact Anne Gramiak agramiak@aesnet.org.
- Have you shared your perspective on the Rare Epilepsy ECHO launching in 2023? Please share a brief survey with your constituents living with rare epilepsies and their caregivers to describe their experience with diagnosis, treatment and care and ways we can train more health care professionals on the most pressing topics. You and your constituents are also invited to join a sharing session on 4/20 @ 3:30 PM ET.
- Grants are available from Global Genes for Global Advocacy Alliance members for Financial Advocacy initiatives here. Applications due by 5/11.
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Upcoming conferences for Rare Leaders and Your Communities. - 4/26-4/28 Epilepsy Foundation's 2022 Public Health Institute Virtual conference. REN Member's Only. Registration information sent separately. For more information, contact; Programs@efa.org
- 5/7, 5/9 & 5/11 - Upper Midwet Rare Epilesies Conference - Help spread the word. Hosted by Epilepsy Foundations of MN, WI, MI and Greater Chicago. More information and registration here.
- 5/13-15 EpiCon, Empowering Persons Living with Epilepsy (Nashville, TN) here Free registration, exhibits and hotels for REN members. Contact Valerie DiCristoforo for more information: vdicristoforo@efa.org
- 6/5-6 NEW DATE EF's 2022 Pipeline Conference (and Shark Tank) (Santa Clara, CA) here
- 6/26 NORD's Patient & Family Forum - Living Rare, Living Stronger here
- 7/4-8 XVI Workshop on Neurobiology of Epilepsy (WONOEP 2022) here
- 10/17-18 NORD Rare Summitt 2022
- 12/2-6 AES Annual Mtg (Nashville, TN)
Any other conferences on your radar? Please share with info@rareepilepsynetwork.org. Publicize your disease focused events on: REN Google Groups list-serve. Send a message to: ren-rare-epilepsy-network@googlegroups.com (Members Only). |
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Rare Disease Days - Spreading Awareness |
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REN Members and Coordinating Committee are hard at work often behind the scenes and our impact and footprint continue to grow. In March, REN.. - launched a Multi-disciplinary clinic work group,
- promoted the launch of CURE Epilepsy's NEW grant program targeting rare epilepsies - Thank You CURE!,
- welcomed Cri Du Chat Research Foundation and Cure GABRB2,
- fielded questions and made referrals to REN members for patients recently diagnosed with Lafora, PCDH19, Jeavons, Myoclonic Eyelid Seizures, Rasmussens Encephalitis, TLE, and Dravet,
- signed onto Seizure Safe Legislation,
- promoted REN speakers and booth opportunities at EF's Epicon & Leadership conference,
- continued member interviews, and
- posted blogs on Jordan's Guardian Angels, Purple Day and sleep resources.
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Key Toolkits & Resources @ Your Fingertips. |
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Got Research Grants? Looking for Data? |
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The REN registry includes data for 1459 patients across 40 diseases! Access data for comorbidities, developmental milestones, seizure medications, side effects, seizure history and more. |
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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. |
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Visit our Website | Become a REN Member | Follow Us on Twitter Share news, information and more to info@rareepilepsynetwork.org Rare Epilepsy Network (REN) working with urgency to improve outcomes of rare epilepsy patients and families by fostering patient-focused research and advocacy. |
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