УКРАЇНСЬКА ПРОТИЕПІЛЕПТИЧНА ЛІГА

 

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Other upcoming events:

 

You can consult recent publications on rare and complex epilepsies, epilepsy surgery and other topics on our scientific publications webpage. 

 

EpiCARE members: please remember to mention EpiCARE in your affiliations or in the acknowledgements / references when appropriate. 

Isabella Brambilla as Member IRDIRC Clinical Research Networks represented the community of patients affected by rare and complex epilepsies (EpiCARE) at the conference on clinical research networks (CRNs) for rare diseases. The International Rare Diseases Research Consortium (IRDiRC) and the European Joint Programme on Rare Diseases (EJP RD) are jointly organising this conference. It was a very interesting conference full of contributions, insights and critical points. Great opportunity for patients to have a confrontation with an international multidisciplinary team. The objective of this conference is to gather experts from different continents to increase mutual knowledge on CRNs structure, activities and identify pathways to stimulate collaboration and interoperability of these networks. 

Once again, the importance of networks such as EpiCARE and ERNs in Europe in advancing the best possible care for rare diseases.

Infantile Spasms Awareness Week is held annually from December 1st to December 7th.

Infantile spasms are a form of epilepsy that affects babies and young children. 

 Although they are rare they are the most common seizure in children under one year of age and these “little” seizures can have massive consequences. It often shows as brief, repetitive movements such as eye rolls, jerking of the body and head drops.Each episode lasts 1-2 seconds then there is a pause for few seconds that is followed by another episode of spasms. IS is much more serious than it appears with chaotic brainwave pattern that causes loss of skills and brain damage. The longer the spasms are untreated and uncontrolled, the greater the impact on future development.
Prompt diagnosis of infantile spasms is essential, because the earlier a child is diagnosed the greater the chance they can be effectively treated. This is challenging because infantile spasms can be mistaken for normal baby movements or other conditions that don’t demand urgency such as colic, reflux, or a startle reflex. 
IS are a medical emergency so many associations have joined forces and started the action network to STOP infantile spasms. The aim of this campaign is to help parents see and recognise the signs, take a video, obtain a diagnosis and prioritise treatment!

Patient Advocates were an integral part of the 3rd Rome EpiCARE supported conference “In Search of Lost Time”. This year’s theme was “From Epileptogenesis to Clinical Practice”, and once again the patient was at the heart of all presentations. Dr Kees Braun from the Netherlands gave a presentation on ‘Precision medicine’, advocating for physicians to be personalised for patient benefit and urging the clinician to “talk less, listen more”. Prof Helen Cross OBE’s presentation continued that theme as she examined ‘Patient-centred outcome measures in epilepsy’.

On 14th of December during the Session 5, our ePAGs, Isabella Brambilla and Emma Nott, and patient representatives, Arianna Zinco and Martina Piccolo from Associazione Famiglie LGS Italia, have presented 2 topics. One is “How registries from patients associations can help research?“ that was led by 2 siblings of patients affected with Lennox-Gastaut syndrome, and the second one „How can patients advocates support actions for better healthcare pathways“ by Emma Nott from Hope for Hypothalamic Hamartoma.Patient representatives from Associazione Famiglie LGS Italia gave a fantastic presentation demonstrating to the clinicians and researchers present how patient associations have led the way in creating registries in order to help research, and gave a masterclass in how to set up and maintain a registry for patients affected by rare and complex epilepsies. ePAG representative Emma Nott followed up with an example of how a patient advocacy organisation – Hope for Hypothalamic Hamartomas – helped shape the HH Patient Pathway in the UK and both helped develop and then secure NHS funding for laser ablation surgery for focal epilepsies in the UK. Both talks gave great insight in the role of patient’s associations in developing registries for various studies and supporting and improving clinical care of patients affected with rare and complex epilepsies. We hope that these lectures also have encouraged healthcare professionals to collaborate with patient’s associations as together we can create better conditions for the patients and achieve the best quality of life possible! All in all Nicola Speccio, the conference host, did a fantastic job of creating an ambitious and comprehensive programme which ensured an energetic, informative and collaborative congress.

Any news you would like to share, events planned, publications in the works? 

 

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