Team IBE connecting with chapters and advocates at the?Asian and Oceanian Regional?Congress, Delhi, India.
INTERNATIONAL BUREAU FOR EPILEPSY
非盈利组织
Washington ，DC 1,725 位关注者
The Global Voice of People with Epilepsy https://www.ibe-epilepsy.org
关于我们
The International Bureau for Epilepsy (IBE) is made up of laypersons and professionals interested in the medical and non-medical aspects of epilepsy. We address social problems such as education, employment, insurance, driving licence restrictions and public awareness. We do this through funding social improvement programmes for people with epilepsy and their families, creating means for worldwide exchange of information and, where possible, setting standards which provide an international policy focus and identity for all persons with epilepsy. Much of this work is accomplished through the IBE working commissions, composed of volunteers who are experts in their subjects. The IBE was established in 1961 and has grown to almost 140 chapters in over 100 countries all around the globe. The Bureau is the recognised international umbrella body representing national epilepsy organisations that have a specific interest in improving the social condition and quality of life of people with epilepsy and their carers. The IBE is an incorporated, not-for-profit, international organisation constituted in accordance with law and registered in the District of Columbia, USA. (Charter ID 721834-DNP). The Bureau also works in close liaison with the International League against Epilepsy (ILAE), an organisation of medical professionals involved in the medical and scientific issues of epilepsy. IBE is funded mainly by membership dues from its chapters and by financial support from other contributors.
- 网站
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https://ibe-epilepsy.org
INTERNATIONAL BUREAU FOR EPILEPSY的外部链接
- 所属行业
- 非盈利组织
- 规模
- 11-50 人
- 总部
- Washington ，DC
- 类型
- 非营利机构
- 创立
- 1960
- 领域
- epilepsy、healthcare和patient care
地点
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主要
获取路线
1015 15th St
NW Suite 1000,
US，DC，Washington ， 20005
INTERNATIONAL BUREAU FOR EPILEPSY员工
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Marie Ennis-O'Connor
Healthcare Communications Consultant
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Deirdre Floyd
Former Vice Chair North American Region IBE
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Vinay Jani
Motivational Speaker I Epilepsy Advocate I Pioneered in Supply Chain Management I IBE International Golden Light Awardee 2021 l Ultra Randonneur I…
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Abderrahmane CHAHIDI DCFP, MRrici
Associate Researcher at Basic and Clinical Neurosciences Research Labor & Vice President of SMNPH
动态
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At the recent East, Central, and Southern Africa (ECSA) Health Ministers Conference, IBE leadership successfully urged national leaders to prioritize epilepsy in health policies and budgets. This advocacy led to significant commitments to strengthen epilepsy care and support across the region ? Eswatini: The Minister of Health pledged increased funding for epilepsy programs and expressed interest in attending the IBE Epilepsy Convention. ? Tanzania: The government committed to delegating a senior health official for the Epilepsy Congress, reflecting a growing national focus on epilepsy care. ? Lesotho: Officials pledged to develop an #IGAP Roadmap for epilepsy, ensuring its integration into national health strategies. ? Uganda: Leaders showed interest in developing a national epilepsy roadmap, with plans to engage the Ministry of Public Health for implementation. ? Mauritius: The Principal Secretary reaffirmed government support for local epilepsy organizations, strengthening collaboration for epilepsy care.
Congratulations to INTERNATIONAL BUREAU FOR EPILEPSY Africa Region on their success at the recent East, Central, and Southern Africa (ECSA) Health Ministers Conference. IBE leadership urged national leaders to prioritize epilepsy in their health policies and budgets. Further discussions with various ministers and health officials were successful in securing commitments to increase epilepsy support. Key examples include: Eswatini :?The Minister of Health pledged to?increase funding?for epilepsy programs and expressed interest in attending the IBE Epilepsy Convention. Tanzania :?The government committed to delegating a senior health official for the Epilepsy Congress, demonstrating?growing national interest in epilepsy care. Lesotho :?Officials pledged to develop an #IGAP Roadmap?for epilepsy, ensuring its integration into the country’s health strategies. Uganda :?Interest was expressed in developing a?national epilepsy roadmap, with plans to engage the?Ministry of Public Health?for implementation. Mauritius :?The Principal Secretary reaffirmed government support for?local epilepsy organizations, strengthening collaboration for epilepsy care. Full story here ? https://lnkd.in/eUsWaz3J #africanhealth #healthequity #epilepsyadvocate #epilepsyisglobal ??
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Thank you Vinay Jani for sharing your reflections on the recent AOEC Regional Congress
Motivational Speaker I Epilepsy Advocate I Pioneered in Supply Chain Management I IBE International Golden Light Awardee 2021 l Ultra Randonneur I Marathoner
Connecting, Learning, and Advancing Epilepsy Care – Reflections from the Asian Oceanian Epilepsy Congress & Epilepsy & Society Symposium Attending the ILAE-IBE Asian Oceanian Epilepsy Congress was an incredible opportunity to engage with experts, advocates, and researchers from across the region. Discussions on new research, the role of AI in epilepsy care, and the debate between older vs. newer anti-seizure medications highlighted the evolving landscape of epilepsy treatment. It was also inspiring to witness young advocates being honored with the IBE Golden Light Award, reinforcing the power of youth-led advocacy. One of the most enriching aspects of the congress was meeting people from different countries, understanding the progress they have made for their epilepsy communities, and learning from their challenges, policies, and best practices. These cross-country exchanges provided valuable insights into how tailored approaches can drive meaningful change. At the IBE Epilepsy & Society Symposium, the focus shifted to the progress on the Intersectoral Global Action Plan (IGAP) in the region and key findings from the Global Epilepsy Needs Study (GENS). These discussions reinforced the need for collaborative action to address the gaps in epilepsy care and societal acceptance. Grateful for the opportunity to connect, learn, and contribute to shaping a future where epilepsy awareness, research, and advocacy continue to make a difference! INTERNATIONAL BUREAU FOR EPILEPSY , International League Against Epilepsy #Epilepsy #EpilepsyAwareness #IGAP #GENS #EpilepsyResearch #EpilepsyAdvocacy #ILAE #IBE
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?? Mark your calendars! The European Brain Health Summit is happening on 19 March, from 09:00 – 12:00 CET! Join the European Academy of Neurology in person or online as global experts, policymakers, and advocates come together to discuss key strategies for advancing brain health in Europe. Don’t miss this opportunity to be part of the conversation shaping the future of brain health! ?? Date: 19 March ? Time: 09:00 – 12:00 CET ?? Register now: ow.ly/zgHA50UR2Ug
Mark your calendars for the European Brain Health Summit on 19 March, from 09:00 – 12:00 CET! Join the European Academy of Neurology in person or online as global experts, policymakers and advocates come together to discuss key strategies for advancing brain health in Europe. ??Register now: ow.ly/zgHA50UR2Ug #EANeurology #BrainHealthMission #BrainHealth #BrainHealthSummit #BrainHealthInEurope #Europe
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Join Dravet Syndrome European Federation on 28 February for an exclusive webinar on the latest advancements in treatments and scientific research for hashtag #DravetSyndrome #RareDiseaseDay
?? Rare Disease Day: Dravet Syndrome Webinar The right information can make all the difference! Join us next Friday for an exclusive webinar on the latest advancements in treatments and scientific research for #DravetSyndrome. ?? Moderated by Dr. Luis Miguel Aras Portilla, Chief Scientific Officer of the Dravet Syndrome European Federation, this session is a unique opportunity to stay informed and connect with the community. ?? ?? Register now using the link in the comments! Don’t miss it! #RareDiseaseDay #DSEF
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Congratulations to this year’s Asian and Oceanian Regional Golden Light Awards winners. These awards serve to acknowledge and honour young people impacted by epilepsy, whether they live with the condition or have significantly contributed to improving the lives of others with epilepsy. The recipients will be presented with their award at the 15th Asian and Oceanian Congress this weekend in New?Delhi, India.
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Dravet Syndrome European Federation is hosting a webinar on #RareDiseaseDay February 28th Registration is required at the link below
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Workforce “wellbeing” is no longer a nice-to-have – human capital, particularly brain capital, has emerged as a strategic imperative, one that impacts the workplace and beyond. In the workplaces of the future, the World Economic Forum ranks cognitive skills at the top of most in-demand skills for workers. Yet, mental and neurological?conditions pose significant barriers, representing a greater global burden than cardiovascular disease or cancer. Organizations that prioritize holistic brain health initiatives can unlock transformative social and economic outcomes including enhanced productivity, greater innovation, more adaptable workforces, and reduced healthcare costs.
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Such a powerful quote from Adam Jallow Janneh
Monday is here and we are still tackling #stigma. A great opportunity to remind you that epilepsy is not a curse, and no one should be treated as one. Stigma isolates but awareness unites. #endstigma #EpilepsyAwareness #InclusionMatters #PurpleBenchInitiative
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The future of epilepsy advocacy is in good hands! Check out this insightful video created by the talented members of our Global Epilepsy Leaders Programme for International #EpilepsyDay. Vinay Jani Cassie Corral Myeonghui Lee Fides Uiso
Undergraduate student in governmental policy, big data at Hanbat National University || Global Epliepsy Leader of IBE
#myepilepsyjourney After long road, our group completed this content?? Thank you for sharing your story. ?????? ?? ?? ??????? ?? ???? ?? ??? ?????. ??? ? ????? ????Vinay Jani??