Introducing the New REN Map! Where’s the Rare? |
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REN is excited to announce a NEW webpage for families, clinicians, and collaborators! We have created a MAP including the headquarters for our members. NOTE: The Majority of REN members serve national and international constituents no matter where they are headquartered. We hope this map will facilitate new connections and partnerships. Thanks to REN intern Justin Wan for creating this valuable resource. Click here to check the map out! Additions, corrections or updates? Contact info@rareepilepsynetwork.org REN is onboarding NEW members at the speed of ... genetic and other discoveries. Warm welcome to CureDRPLA, Alliance to a Cure (Cavernous Malformation), Louies Huwe, FAM177A1 Research Fund, and Sturge-Weber Foundation. Alas summer is winding down and REN members are gearing up for a busy fall with in person meetings back in full swing. Look for REN leaders at upcoming conferences including Global Genes, NORD, CNS, AES and more. Speaking of conferences - take advantage of early registration at the annual AES meeting. Nonprofits get discounted rates. REN members are invited to share our booth to disseminate your literature and network. Stay tuned for more information about REN's annual gathering during AES - details coming early fall. Contact info@rareepilepsy.org for more information. Warmly, The REN Coordinating Committee PS: MEMBERS ONLY: Our next mtg is Sep 26 at 1 PM ET. No meeting in August. |
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Upcoming conferences for Rare Leaders and Your Communities. 8/8-19 Everylife's Rare Across America here 9/12-14 Global Genes Patient Advocacy Summit (San Diego, CA) here 9/13 Global Genes Rare Champions of Hope (San Diego) here 10/12-15 Child Neurology Society (Cincinnati, OH) here 10/17-18 NORD Rare Summitt 2022 (Washington, DC) here 12/2-6 AES Annual Mtg (Nashville, TN) here
Any other conferences on your radar? Please share with info@rareepilepsynetwork.org. Disease focused scientific and patient conferences may be shared on REN's member only list-serve or tagged on Twitter. |
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Rare Disease Days - Spreading Awareness |
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August 7th - World PVNH Awareness Day August 8th - Chromosome 8p Day |
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September - STXBP1 Disorders Awareness Month September 9th - Polymicrogyria (PMG) Awareness Day |
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September 9th - 9p Minus Awareness Day September 15th - Hypothalamic Hamartoma Awareness Day/Month |
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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 July, REN... Fielded questions, offered assistance and/or made referrals for: TFE3, Morgellon's Disease, KCNQ5, CFC, Refractory Epilepsy, CACNA1A, STXBP1, and HUWE1. NOTE: when a request is made for a disorder where we have a REN member - we make a referral to REN member organizations. These requests come from patients/caregivers, as well as clinicians, academic partners, government, and industry. We also make best efforts to connect families (with permission) as they seek to find each other. Met with and onboarded multiple new REN members. See our welcome post. Hosted our monthly meeting. Guests included the Epilepsy Learning Health System (ELHS) with an update and invites to participate in upcoming meetings. Also, we learned about JumpStart's Million Dollar Bike Ride and Genetics Counselor match programs. Fielded inquiries from industry re: clinical trials. The Multi-disciplinary group continues its work. Clinician and families participating in clinics surveys coming this fall.
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Childhood Neurology Foundation |
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Got Research Grants? Looking for Data? |
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Rare Epilepsy Network (REN) survey data was recently contributed to the Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP). This database allows researchers and developers to look across rare diseases to gain insights, develop new tools and methods to improve clinical trial designs, and empower rares. Learn more here and share this opportunity with researchers in your communities. 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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