CURE CMD’s Post

Today is Rare Disease Day. We're highlighting the Rare Epilepsy Network's (REN) vital mission and honor our community members and families in Michigan who are living with rare epilepsies. The Rare Epilepsy Network (REN) is an organization that seeks to connect patients and families who are living with rare epilepsies to improve outcomes and champion patient-focused research and advocacy. Over the last 10 years, over 100 organizations representing various rare epilepsy diagnoses have joined the Rare Epilepsies Network. #raredisease #rarediseaseday #REN #epilepsy #epilepsies #seizures

Today, on Epilepsy Awareness Day, our team at the Entabeni Epilepsy Unit stands in solidarity with individuals worldwide affected by epilepsy. 💜 Through our dedicated work, we strive to provide support, care, and advocacy for those living with epilepsy. 🧠 Let us continue to raise awareness, challenge stigma, and promote understanding. Together, we can make a difference. 💫 #EpilepsyAwarenessDay #Support #EndTheStigma"

National Epilepsy Awareness Day! The Dup15q Alliance is proud to be a part of this International Day of collaboration and global efforts to raise awareness and mobilize the epilepsy community to take action. Over half of the individuals with Dup15q syndrome, whether idic, interstitial or mosaic, will experience at least one seizure in their lifetime. Some seizures are easily controlled with the first medication, other seizures are controlled for a while and then become more complex, and some affected individuals experience intractable seizures that have never been controlled with medication. We are dedicated to the fight for care, advocacy, research and education about seizures in Dup15q syndrome. Learn more about seizures in Dup15q here: https://lnkd.in/g9q5aHPi #Dup15q #Believe #NationalEpilepsyAwarenessDay #Seizures #Medication #Intractable #Advocacy #Research #Education

Make a Difference for People Living with Epilepsy! The House and Senate have launched bipartisan Congressional Epilepsy Caucuses! These caucuses, led by Representatives Greg Murphy (R-NC) and Jim Costa (D-CA) in the House and Senators Amy Klobuchar (D-MN) and Eric Schmitt (R-MO) in the Senate, are crucial for advocating for: • Increased funding for epilepsy research • Improved access to quality epilepsy care • Creation of better policies that support people with epilepsy Why are Caucuses Important? The more members in a caucus, the stronger its voice in Congress! A larger Epilepsy Caucus means more champions fighting for epilepsy legislation and resources. Take Action Today! 1. Find your elected officials: Use VoterVoice (https://loom.ly/YdcO_98) to quickly identify your representatives and senators. 2. Ask them to join the Caucus! VoterVoice allows you to personalize a message for each official, urging them to join the Epilepsy Caucus. With a few clicks, you can raise awareness and make a real difference. Thank you, @RepresentativeBabin (TX-36)! You are already a champion for epilepsy by being part of the Caucus.*Use VoterVoice to send a thank-you message for his dedication. What is VoterVoice? It's a safe and secure platform for contacting your legislators. The first time you use it, they'll send a verification code to your email for security purposes. Stay Updated! By checking the "receive email alerts" box, you'll get updates from the Epilepsy Foundation and the Epilepsies Action Network (EAN) on epilepsy advocacy efforts. You can always unsubscribe later. Together, let's build a stronger Epilepsy Caucus and improve the lives of millions! #EpilepsyAwareness #CongressionalEpilepsyCaucus #TakeAction

Today on #WorldBrainDay2024 join the discussion surrounding awareness, prevention, advocacy, education, and access for #BrainHealthandPrevention as we empower individuals to seek care for optimal brain health. Learn more from the World Federation of Neurology at https://lnkd.in/dQiTq4FU

Etiology matters. It matters for HIE. It matters for CP. It matters for epilepsy. It matters. Accurate information sharing is essential from patient advocacy organizations and providers alike to help communities understand the complexities of diagnosis and drive forward research to improve care and outcomes.

FREE webinar - #UrgentCare professionals, learn how you can affect change in the industry.

Today is #PurpleDay, the international day for epilepsy, and an opportunity to raise awareness and understanding about epilepsy. Epilepsy is a hidden disability, which contributes to misconceptions about it. It affects approximately 630,000 people in the UK, and you can develop it at any time in your life. Without the ground-breaking work of the Epilepsy Society, treatment, and support options for people with epilepsy would not be where they are today. That is why I am incredibly proud to be a Trustee of @EpilepsySociety, who transform the lives of people of epilepsy in the UK through world-leading research, advocacy, and care. You can learn more about the work they do through their social media, or their website. #StampOutSeizures #epilepsy

Self advocacy is so important. https://lnkd.in/gTBCpW-f

National Eczema Association The Eczema Expo is my favorite conference hands down. Such a great mix of patients, providers, advocacy groups and industry. Can tell… this is how progress happens for eczema patients. We talked: itch, aging, 7 types of eczema, and how to optimize your appointments.