Building awareness and communities to support and find treatments for Rare Diseases and Genetic Conditions

Foundation Partner News

Sorry, no posts matched your criteria.

Submit Your Story

Patient Story Submission Form

Do you have a rare story of hope and courage to share?
If so, we want to hear from you! Simply submit your story by following the steps and using the form below.
Step 1: If you are submitting on behalf of someone other than yourself (ie. friend or minor child), please obtain permission BEFORE you submit this form. Click the check box that confirms you have permission to submit this story and that you agree to have the story published on our website and social media pages.
Step 2: BEFORE filling out this form, make sure you have a high-res digital picture available and ready to upload of the individual/family the story is about. We prefer a square aspect ratio photo (minimum 400px by 400px, preferably larger).
Step 3: Complete the form below, including uploading your picture.
Once you submit this form, you will receive a confirmation email and further information regarding your story submission.
If you have questions, please email the Director of our program, Ilana Jacqueline.
Your Name*
FirstLast
Your Email*
Address
Street AddressCityState / Province / RegionZip / Postal CodeCountry
Share my Location?*
- yes
- no
By default, we like to share the City/State that you provide here within the story on our website. If you prefer to have your location remain anonymous please select "NO" above.
Phone
We will never share your phone number. It is NOT required. We will only use this number in the event we need to contact you about your submission.
Twitter Handle
Facebook Link
Patient Name*
Only the First name of the patient
Rare Disease | Genetic Condition
Patient or Foundation Website
e.g. http://myfoundation.org The website, blog, or Facebook page for your personal website or your disease foundation.
Give Your Story a Title*
The Patient Story Content*
Stories should be no more than three paragraphs long.
Upload a Picture of the Patient*
Maximum File Size: 10MB
Share more images?
Maximum File Size: 10MB
Share more images?
Maximum File Size: 10MB
Share more images?
Maximum File Size: 10MB
Permission to Publish*
- Yes, I agree to the terms and conditions.
By submitting your story/photo, and clicking the checkbox above, you grant the Global Genes Project (& the R.A.R.E. Project) permission to use your story, photo, first name, and city/state (if provided) as part of our ongoing programs to increase rare disease awareness. We will never publicly use your last name, email, or phone number.

Support Global Genes Project

Global Genes Project Donations - Paypal - OLD - Inactive

Where there is support, there is hope!

Please donate to the Global Genes Project.
Together we can make a difference in the lives of millions living with rare and genetic diseases.
Donation Amount*
- $1
- $10
- $25
- $50
- $100
- $250
- $500
Every dollar counts!
Name*
FirstLast
Email*
Phone
Address*
Street AddressCityState / Province / RegionZip / Postal CodeCountry
We are happy to accept credit card donations!
When you hit the Donate button, Paypal will ask for your account information...
You are not required to open a Paypal account!
Simply click the "continue link" next to the credit card logos and enter your credit card data.
Thanks again!