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Share Your Story

What's YOUR EHE story and why is it important to share it?

Throughout the month of November, leading up to Giving Tuesday on December 3rd, we will be highlighting EHE stories on our social media platforms and website to raise awareness about this rare cancer.

Your EHE story has the power to inspire, inform, and make a difference. Sharing your journey can help raise awareness for this rare cancer, connect with others facing similar challenges, and shine a light on the urgent need for research and treatments.

Together, we can amplify the voice of the EHE community and drive change. Please share your story below and help us spread awareness. Your voice matters!

Share your EHE Story

"*" indicates required fields

Step 1 of 5

20%

I am a ...*

Patient 18 years or older

Caregiver of a patient

Your Name*

First Last

Patient's Name*

First Last

Email*

Your EHE Story

Tell us your EHE story. Try to include the path to diagnosis and how you felt.*

Who or what helped along the way?*

Additional Details (optional)

What do you fear? How do you feel about living with EHE?

Tell us about a high point and/or a low point in your journey and how it made you feel. What did you learn?

What are some words of advice for someone new to EHE?

Photo / Media Upload

Photo(s)*

Please upload at least one photo of yourself alone or with a pet. You can upload up to four images. If your images are too big, please email them to [email protected]. We will reach out for photo releases for anyone else who is in your pictures.

Drop files here or

Accepted file types: jpg, jpeg, gif, png, pdf, Max. file size: 10 MB, Max. files: 4.

Video

OPTIONAL: Upload a short, 1-2 minute talking about your EHE journey. Use the questions above as your guide. Phone videos work well. We may edit your video for length.

Drop files here or

Accepted file types: mp4, Max. file size: 50 MB, Max. files: 1.

Release and Consent

Release and Consent for Patient Over 18*

I, the person in this story/photo/video, consent and grant to The EHE Foundation the right and permission to use and publish statements made by me and my image in any and all media formats for the purposes authorized here: staff/volunteer/board member education and internal foundation meetings; The EHE Foundation website and social media channels; discussions with advocacy partners; pharmaceutical companies and the FDA; presentations or brochures; media and press releases, and other similar purposes to publicize or present The EHE Foundation’s programs in other forums. I understand that my participation is voluntary and I release and discharge The EHE Foundation from any and all liability arising out of or connected to their exercise of these publicity rights for the authorized purpose(s) described above. There is no time limit on the validity of this release nor is there any geographic limitation as to where these publicity rights may be exercised.

Release and Consent for Parents/Guardians of Patient*

I, the parent/guardian of the minor child in this story/photo/video, consent and grant to The EHE Foundation the right and permission to use and publish statements made by me, as well as my image and the child’s image, in any and all media formats for the purposes authorized here: staff/volunteer/board member education and internal foundation meetings; The EHE Foundation website and social media channels; discussions with advocacy partners; pharmaceutical companies and the FDA; presentations or brochures; media and press releases, and other similar purposes to publicize or present The EHE Foundations’s programs in other forums. I understand that my participation is voluntary and I release and discharge The EHE Foundation from any and all liability arising out of or connected to their exercise of these publicity rights for the authorized purpose(s) described above. There is no time limit on the validity of this release nor is there any geographic limitation as to where these publicity rights may be exercised.

Marketing Consent

Add me to The EHE Foundation email list to receive a bi-monthly email newsletter featuring the latest research updates, resources, events, and opportunities to get involved.

We also occasionally send additional time-relevant emails. You may unsubscribe at any time.

This field is for validation purposes and should be left unchanged.

Affiliations

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1-877-460-4240 (toll-free US)

1561 Hopi Court
Hobart, WI 54313

[email protected]