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On March 21-22, I had the opportunity to represent the KCNQ2 Cure Alliance at the 2019 Research Roundtable for Epilepsy organized by the Epilepsy Foundation. Now in its fourth year, the annual meeting brings together patient advocacy organizations with leading epilepsy experts from research organizations and pharmaceutical companies with regulators from the Food and Drug…
Last week I spent two days around the halls of Congress, lobbying as part of the Rare Disease Week activities on Capitol Hill, organized by the Rare Disease Legislative Advocates (RDLA). Each year, hundreds of rare disease advocates from all across the country and all political stripes descend on Washington DC to help lawmakers better…
Collaboration is key to efficiently advancing our mission to improve the lives of patients with KCNQ2 developmental and epileptic encephalopathy.
While KCNQ2 itself is a rare disease, it has many commonalities with other rare and not-so-rare disorders, and manifests with symptoms – such as autism, sleep and mood disorders, and GI issues – that are seen quite commonly. We welcome discussions and partnerships with doctors, researchers, academic institutions, biopharmaceutical companies, and patient organizations, on a global basis, who share our passion of advancing treatments for patients with KCNQ2. If you are interested in opening the dialogue with KCNQ2 Cure Alliance, please contact Caroline Loewy.