Events
Upcoming events
Throughout the year, we’ll be hosting a series of events for the PNH community.
Hear from members of the PNH community – people actually living with PNH. Learn about the science behind PNH. Take a deep dive into strategies to help you better manage your life with PNH.
Below is a list of upcoming events with descriptions and links to register. You’ll receive specific location information once you’ve registered. Hope to “see” you soon! Don’t forget … the Aplastic Anemia and MDS International Foundation also offers community events, which can be found here.
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Daily life with PNH: Asking for what you need
Life can be difficult and living with PNH has its own set of challenges. Join us as we dive into small steps you can take to help you better care for your emotional health and speak up about your needs.
Please note that this program is intended for U.S. residents only7/16/2022
10:00 AM–11:00 AM PT
Hosted by Brenda -
Daily life with PNH: Asking for what you need
Life can be difficult and living with PNH has its own set of challenges. Join us as we dive into small steps you can take to help you better care for your emotional health and speak up about your needs.
Please note that this program is intended for U.S. residents only7/27/2022
9:00 AM–10:00 AM CT
Hosted by Kristen -
Daily life with PNH: Managing stress
Living with PNH can impact many aspects of your daily life. Join us as we explore strategies that may help you better manage the everyday stress that comes from life with PNH.
Please note that this program is intended for U.S. residents only8/10/2022
7:30 PM–8:30 PM ET
Hosted by Mary -
Daily life with PNH: Asking for what you need
Life can be difficult and living with PNH has its own set of challenges. Join us as we dive into small steps you can take to help you better care for your emotional health and speak up about your needs.
Please note that this program is intended for U.S. residents only9/8/2022
7:30 PM–8:30 PM ET
Hosted by MaryThis is an in person event in N/A, Virtual
Previous events
Explore community conversations about life with PNH that you may have missed. You can watch the event or just listen to audio clips.
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Community Conversations: Finding balance as a caregiver without feeling guilty
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Community Conversations: Balancing a career with caregiving
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Community Conversations: Managing stress as a caregiver
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Community Conversations: Putting yourself on the list
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Community Conversations: Answering your questions as a PNH caregiver
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Community Conversations: Advocating for your needs
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Community Conversations: Speaking up with friends and family
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Community Conversations: Finding your voice with your doctor
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Community conversations: Talking to your boss
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Community Conversations: Answering your questions about advocating for yourself
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Community Conversations: Managing Daily Life with PNH
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Community Conversations: Managing everyday tasks
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Community Conversations: Finding self-compassion
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Community Conversations: Parenting
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Community Conversations: Answering your questions about managing daily life with PNH
These videos and audio clips feature real people living with or caring for someone living with PNH, along with tips from an expert. These individuals were compensated by Apellis for the time involved in sharing their story in their own words. Every person’s experience with PNH is unique. As always, talk to your healthcare provider about questions you may have on PNH, its symptoms and treatment.