Why It Matters

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Your story also makes a difference

Interested in getting involved with EPICrd from the comfort of your home? Want to share your experience with the community? We invite you to share how Medicaid access has affected your rare disease journey. Every experience has the ability to have an impact on motivation and change.

Guidelines for your story

If you decide to share your story:

Man typing on computer with text bubble icon

Guidelines for your story

If you decide to share your story:

  • In less than 300 words, share your personal story about a time when you had no access to what you needed to live your best life
  • Maintain focus on your experience
  • Patient stories must not include: full names of medical staff or people; solicitation of medical advice; mention products and/or medications

Should you decide to share your story and email, please review and sign the release below. Once we have received your release, we will be in touch.

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Please check the Form for errors and resubmit.

Your Connection to the Rare Community
Release to Use Submitted Written Materials and Video/Photo/Likeness/Recording
I, the undersigned, expressly grant BioMarin Pharmaceutical Inc. and its respective licensees, successors, assigns, and any individual, business, entity, or other third party acting on behalf or at the direction of BioMarin Pharmaceutical Inc. and its respective licensees, successors, assigns (collectively “BioMarin”) the right to use, publish, copyright, exhibit, and/or transfer my written materials, video, photograph, likeness and/or recording as set forth in this Release.
1. Use. I agree that any written materials, video, photographs, likeness or recording of me, made by BioMarin or on behalf of BioMarin by a company specifically contracted for this purpose by BioMarin, in support of advocacy efforts for the EPICrd (Ensuring Parity through Individualized Care for Rare Disorders) Act, may be used by BioMarin for posting to www.epicrd.org and related social media channels and other materials, internal use, or posting to BioMarin’s corporate social media channels. I acknowledge that such use may include, among other things, use in the following medium or media: electronic, print, or the internet. If I should receive any print, negative, recording, digital copy, or other copy thereof, I shall not authorize its use for any commercial purpose without BioMarin’s prior written consent. I relinquish and give to BioMarin all rights, title, or interest to any reproductions and copies of the original written materials, video, photographs and recording for lawful purposes. I hereby waive any right to any royalties or other compensation for the use of the video, photographs, likeness, and recordings taken based on the permission granted above, including, without limitation, rights related to corporate use or scientific/educational appropriation of likeness.
2. Approval Not Required. I hereby waive any right that I may have to inspect, review and/or approve my written materials, video, photograph, likeness and/or recording or use of such video, photograph, likeness and/or recording.
3. Waiver of Liability. I hereby release, discharge, and agree to hold harmless BioMarin from any and all liabilities, losses, damages, expenses, charges and fees sustained or incurred by myself, my heirs, representatives, executors, administrators, or other persons acting on my behalf or on behalf of my estate arising out of or attributable to this Release, including, without limitation, any liability related to the distortion or alteration of my written materials, video, photograph, likeness and/or recording, whether intentional or otherwise, that may occur or be produced in the taking, creation, processing, publication or other use of such written materials, video, photograph, likeness and/or recording.
4. Protected Health Information. If applicable, I also grant and give BioMarin the right to discuss my medical history, sometimes referred to as Protected Health Information (“PHI”), for the purposes and uses set forth in this Release.
5. Term and Revocation for Future Use. I understand and agree that this Release is perpetual in term and cannot be revoked, except as described in this paragraph. I understand upon receipt of a notice of revocation addressed to BioMarin Pharmaceutical Inc., 105 Digital Drive, Novato, CA 94949, Attention: Legal Department, BioMarin will cease using my written materials, video, photograph, likeness and/or recording for new uses or purposes on a going-forward basis, but BioMarin will not be required to cease using my written materials, video, photograph, likeness and/or recording for any uses that are in existence prior to the date of receipt of such notice of revocation.
6. Governing Law; Venue. This Release is made under and shall be construed according to the laws of the State of California without regard to any conflict of law principles that would provide for the application of the law of another jurisdiction. Any disputes arising out of or attributable to this Release must be brought in the state courts and the Federal courts located in the Northern District of California, and I hereby consent to the personal jurisdiction and exclusive venue of these courts.