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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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previous events

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

    Featuring: Dr. Guy Winch and PNH caregivers Tracy & John
    Topic: Strategies for balancing the demands of caregiving and daily life

    US-PNH-2100262 v1.0

    Community Conversations: Finding balance as a caregiver without feeling guilty

  • Audio only
    US-PNH-2200022 v1.0

    Community Conversations: Balancing a career with caregiving

    Featuring: Dr. Guy Winch and PNH caregivers Tracy & John
    Topic: Balancing the demands of caregiving while still focusing on your own life

    Audio only. US-PNH-2200022 v1.0
    Audio only
    US-PNH-2200022 v1.0

    Community Conversations: Balancing a career with caregiving

  • Audio only
    US-PNH-2200023 v1.0

    Community Conversations: Managing stress as a caregiver

    Featuring: Dr. Guy Winch and PNH caregivers Tracy & John
    Topic: Managing the stress of loving and taking care of someone with PNH

    Audio only. US-PNH-2200023 v1.0
    Audio only
    US-PNH-2200023 v1.0

    Community Conversations: Managing stress as a caregiver

  • Audio only
    US-PNH-2200024 v1.0

    Community Conversations: Putting yourself on the list

    Featuring: Dr. Guy Winch and PNH caregivers Tracy & John
    Topic: Why self-care matters when you’re a caregiver, and how to find it

    Audio only. US-PNH-2200024 v1.0
    Audio only
    US-PNH-2200024 v1.0

    Community Conversations: Putting yourself on the list

  • Audio only
    US-PNH-2200025 v1.0

    Community Conversations: Answering your questions as a PNH caregiver

    Featuring: Dr. Guy Winch and PNH caregivers Tracy & John
    Topic: Tips for managing life as a caregiver

    Audio only. US-PNH-2200025 v1.0
    Audio only
    US-PNH-2200025 v1.0

    Community Conversations: Answering your questions as a PNH caregiver

  • Community Conversations: Advocating for your needs

    Featuring: Dr. Guy Winch and PNH community members Jessi, Jordan & Patricia
    Topic: Exploring strategies to better advocate for your needs

    US-PNH-2100217 v2.0

    Community Conversations: Advocating for your needs

  • Audio only
    US-PNH-2100246 v1.0

    Community Conversations: Speaking up with friends and family

    Featuring: Dr. Guy Winch and PNH community members Jessi, Jordan & Patricia
    Topic: Communicating about PNH with those close to you

    Audio only. US-PNH-2100246 v1.0
    Audio only
    US-PNH-2100246 v1.0

    Community Conversations: Speaking up with friends and family

  • Audio only
    US-PNH-2100247 v1.0

    Community Conversations: Finding your voice with your doctor

    Featuring: Dr. Guy Winch and PNH community members Jessi, Jordan & Patricia
    Topic: Creating partnerships with your care team

    Audio only. US-PNH-2100247 v1.0
    Audio only
    US-PNH-2100247 v1.0

    Community Conversations: Finding your voice with your doctor

  • Audio only
    US-PNH-2100248 v1.0

    Community conversations: Talking to your boss

    Featuring: Dr. Guy Winch and PNH community members Jessi, Jordan & Patricia
    Topic: How to talk about PNH and advocate for your needs at work

    Audio only. US-PNH-2100248 v1.0
    Audio only
    US-PNH-2100248 v1.0

    Community conversations: Talking to your boss

  • Audio only
    US-PNH-2100249 v1.0

    Community Conversations: Answering your questions about advocating for yourself

    Featuring: Dr. Guy Winch and PNH community members Jessi, Jordan & Patricia
    Topic: Tips to better communicate with your doctor, your employer, and your partner

    Audio only. US-PNH-2100249 v1.0
    Audio only
    US-PNH-2100249 v1.0

    Community Conversations: Answering your questions about advocating for yourself

  • Community Conversations: Managing Daily Life with PNH

    Featuring: Dr. Guy Winch and PNH community members Jason & Alyce
    Topic: How to navigate everyday life with PNH

    US-PNH-2100158 v2.0

    Community Conversations: Managing Daily Life with PNH

  • Audio only
    US-PNH-2100191 v1.0

    Community Conversations: Managing everyday tasks

    Featuring: Dr. Guy Winch and PNH community members Jason & Alyce
    Topic: How to manage everyday work and life tasks

    Audio only. US-PNH-2100191 v1.0
    Audio only
    US-PNH-2100191 v1.0

    Community Conversations: Managing everyday tasks

  • Audio only
    US-PNH-2100192 v2.0

    Community Conversations: Finding self-compassion

    Featuring: Dr. Guy Winch and PNH community members Jason & Alyce
    Topic: Finding self-compassion when dealing with PNH and daily tasks

    Audio only. US-PNH-2100192 v2.0
    Audio only
    US-PNH-2100192 v2.0

    Community Conversations: Finding self-compassion

  • Audio only
    US-PNH-2100193 v1.0

    Community Conversations: Parenting

    Featuring: Dr. Guy Winch and PNH community members Jason & Alyce
    Topic: Managing parenting while living with PNH

    Audio only. US-PNH-2100193 v1.0
    Audio only
    US-PNH-2100193 v1.0

    Community Conversations: Parenting

  • Audio only
    US-PNH-2100194 v1.0

    Community Conversations: Answering your questions about managing daily life with PNH

    Featuring: Dr. Guy Winch and PNH community members Jason & Alyce
    Topic: Tips to building in self-care when feeling depleted

    Audio only. US-PNH-2100194 v1.0
    Audio only
    US-PNH-2100194 v1.0

    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.