Together, we will help pave the way for meaningful impact.

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Hi We The Action Volunteer,

Once every four years, we have the opportunity to recognize Rare Disease Day on February 29th.

The first thing to realize about rare diseases? They are anything but rare. In fact, as many as 7,000 rare diseases affect 30 million people in the United States, and half of rare disease patients are children.

Today, I am beyond proud to share that We The Action is teaming up with the Chan Zuckerberg Initiative to support their Rare As One Network. ([link removed]) We The Action’s community of volunteer lawyers will provide ongoing pro bono legal support for the Rare As One Network, a collective of patient-led organizations working to improve the lives of people affected by rare diseases.

TAKE ACTION ON RARE DISEASE DAY ([link removed])
Currently, there is a lack of understanding about rare diseases, and an even greater lack of treatments available. Partnering directly with the patient-centered nonprofits leading this work, the Chan Zuckerberg Initiative works to connect and strengthen these communities, build their capacity, and promote collaboration.

A critical need of these nonprofits is being able to call upon and rely on legal support. That's where We The Action's community of volunteer lawyers comes in.

Today and beyond, we’re mobilizing our network of lawyers to help them navigate a range of issues — from ensuring compliance with regulations governing clinical trial research, to negotiating contracts with research universities and pharmaceutical companies, to setting up governance structures for a collaborative network of nonprofit research partners.

Want to be a part of our groundbreaking partnership? Sign up for Rare As One pro bono projects today. ([link removed])

As part of this project, we will be able to support organizations like I AM ALS, CACNA1A Foundation and many others. Learn more about the partnership and the work we will do together in a piece published in Forbes ([link removed]) today.

This Rare Disease Day and throughout this ongoing partnership, we hope you will join us in contributing to the work of patient-led organizations to improve the lives of people affected by rare diseases. Together, we can make a meaningful impact for patients living with rare diseases and the nonprofits working on their behalf.
With gratitude,
Anna

Anna Chu (she/her)
Executive Director, We The Action

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