Diversity, Equity, Inclusion, Accessibility, & Belonging

Relevant Skills

Communications Copywriting Diversity, Equity, Inclusion, Accessibility, and Belonging (DEIAB) HR Management Stakeholder Research

Published Date

Posted June 01, 2026

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Disease & Medical Research

Disability Benefits Guide

Project

Remote

United Porphyrias Organization

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We want to create a clear, patient-facing disability benefits guide, an easy-to-follow checklist, and editable letter and form templates to help patients begin and track disability claims related to their rare disease. Specific programs, jurisdictional details, and example cases will be provided during volunteer interviews.

This project will help the porphyria community by reducing barriers to disability benefits, improving quality of life through better access to financial and medical resources, and enabling patients to focus on their physical and mental health care, therapies, and participation in research efforts.

We have anecdotal information from patients that describes their experiences and frustrations with the process. We'll collaborate with the volunteer to define scope and review drafts. The volunteer can expect regular check-ins and feedback so final materials are ready for patient use and distribution.

United Porphyrias Organization

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Location

Bethesda, US-MD

Timezone

America/New_York

Website

https://www.porphyria.org

Member Since

Mar 2026

Completed Taproot Plus Partnerships

Organization Mission

We are committed to improving the quality of life of the porphyria community and focused on advancing disease awareness, research, and therapies for all the porphyrias.

Program Focus Areas

Advocacy & Human Rights

Community Building

Healthcare

Human Services

Medical Research

Mental Health & Wellness

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