Last year, We The Action partnered with the Rare As One Network to provide pro bono legal support to a collective of patient-led organizations dedicated to advancing research and improving the lives of those affected by rare diseases.

Since then, 25 rare disease nonprofits — often small organizations with limited resources — have collaborated with We The Action lawyers on research agreements, governance documents, trademark registrations, contracts, and more.

This year, we aim to support 90 rare disease nonprofits, and we need your help!

Join us during Rare Disease Week to connect with two incredible, high-impact organizations working tirelessly to find cures, and discover how lawyers can play a vital role in advancing progress in the field of rare diseases. During this webinar, you will hear first-hand accounts of how lawyers have helped rare disease organizations, the diverse legal needs in the rare disease space, and what you can do to help.

Moderator:
Andra Stratton: Program Manager, Rare As One Network at Chan Zuckerberg Initiative

Panelists:
Cassi Friday, PhD: Director, Research Program & Grants at Cure HHT
Naveen Baweja: Co-Founder at Cure ADSSL1

About our Featured Nonprofits:
Cure HHT is an international advocacy organization supporting and providing educational services for patients and families with the rare blood vessel disease, Hereditary Hemorrhagic Telangiectasis (HHT). HHT is the 2nd most common inherited bleeding disorder with no approved FDA therapies.

Cure ADSSL1 is a patient-led organization committed to advancing research and developing treatments for ADSSL1 metabolic myopathy, a rare and progressive neuromuscular disease. As the only global advocacy group for this condition, they bring together patients, researchers, and clinicians to drive scientific progress and improve patient care.