Brain health conditions impact almost 3 billion people worldwide. The advocacy groups representing this vast community are as diverse as the many men, women, mothers, fathers, teens and children who live with neurological and psychiatric disorders. Some advocacy organizations are local and some global; some are focused on care programs, others on policy change. While the groups each have their own focused purpose, they share a common goal: to advance brain health and improve the lives of people impacted by brain diseases.
Each year, Lundbeck’s #1VoiceSummit brings together patient advocacy organizations from across the world to exchange ideas, collaborate and find ways to amplify the voices of people with lived experience of brain disease. This year, the event was held virtually with nearly 80 advocacy groups from over 20 countries attending. While the groups represented a variety of communities – from Alzheimer’s and anxiety to depression, migraine, Parkinson’s and schizophrenia – they were united by their commitment to reducing the stigma of brain diseases and accelerating meaningful change.
“Our voices are louder when we work together,” says attendee Melissa Calise, Director of Communications for the Association of Migraine Disorders. “While we all have slightly different missions, we all are similar in that we are trying to improve the lives of people who live with debilitating diseases. With that in common, the opportunities for collaboration are limitless.”
“By discussing, listening to one another and partnering together, we are stronger,” agrees Maria Brandão, Senior Manager, Global Public Affairs at Lundbeck, adding that a united front is particularly important when advocating for systemic change. “Our aim is to get parity of care for brain health within the policy arena, so that people with brain health conditions are given the best shot at living their lives to the fullest. For that, we need a leadership that is collaborative, inclusive and that is ready to listen and co-create with the community. Alone we are invisible, united we are invincible.”
This year’s attendees heard from leading experts in brain health, including Shekhar Saxena, Professor at Harvard T.H. Chan School of Public Health and the former WHO Director for Mental Health; Brad Herbert from the Healthy Brains Global Initiative; Joke Jaarsma from the OneNeurology Initiative; and Simone Boselli from The European Association of Rare Diseases (EURORDIS). Representatives from the Lundbeck Foundation, Alzheimer’s Disease International and Changing Minds Globally also spoke on development issues and future planning. And Lundbeck’s CEO, Deborah Dunsire, joined a live Q&A in which she shared the importance of partnering with people with lived experience to ensure innovation translates to meaningful treatments and societal change.
Through a variety of collaborative workshops, the #1VoiceSummit also provided attendees the opportunity to learn from one another and see the challenges and opportunities from the lens of patient groups in different countries. “Being from a small organization, we are always open to new ideas and tips for improving our current initiatives,” Calise says. “Being able to pick the brains of others who are on similar paths was a huge help. From research efforts to fundraising, it was so interesting to hear what strategies worked for other organizations, especially ideas we had never even thought of before.”
Since its launch, Lundbeck’s #1VoiceSummit has gathered more than 296 advocacy representatives from more than 193 organizations and 41 different countries. “The #1VoiceSummit is a natural extension of our work to improve the lives of people with brain health diseases, as well as their families and the community around them,” says Charise Dunn, Senior Manager of Patient Advocacy at Lundbeck. “In hosting the Summit and convening these important patient voices, we can help drive the change needed to address the health inequalities prevailing in this disease area.”