Join UPA’s President’s Council

Current
Written By United Porphyrias

Help strengthen patient support, improve educational resources, inform awareness and advocacy efforts, and elevate the needs that matter most right now.


President’s Council is expanding!

The United Porphyrias Association (UPA) President’s Council is our advisory group that helps ensure UPA’s programs and priorities reflect real lived experience across the porphyrias.

We are inviting people living with porphyria, caregivers, and advocates from across the community to apply. Council members help UPA strengthen patient support, improve educational resources, inform awareness and advocacy efforts, and elevate the needs that matter most right now.

Who should consider applying:

  • People living with any type of porphyria (or XLP/EPP)

  • Caregivers and family members

  • Advocates committed to respectful, inclusive community building


What participation looks like:

  • Monthly virtual meetings and occasional follow-up by email

  • Input on UPA initiatives and community needs

  • A shared commitment to confidentiality and trust

If you are interested, please complete the short application below.

Applications close: February 15, 2026

I’m Lina Rebeiz, and I live with acute intermittent porphyria (AIP). I’m honored to serve as Chair of UPA’s President’s Council, and I’d love to invite you to consider joining us.

We meet monthly to share insights and help strengthen support and resources for the porphyria community. Being on the Council reminds me that our lived experiences have power, and when we bring them together, we help UPA meet people where they are.

Thank you for being part of this community. I hope you’ll consider adding your voice!

With gratitude,

Lina

For more information, review the President’s Council Charter or contact Kristen at info@porphyria.org.

United Porphyrias
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