children’s rare diseases

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

Rare Pictures of Hope™ – Submit Your Hope Stories and Photos Today!

April 19, 2012 by GGP Team 1 Comment

Rare_Disease_Genetic_Undiagnosed_Foundations_NIH

When one of our parent advocates re-posted a picture she found with our slogan, “Hope. It’s In My Genes!” we never imagined it would have the effect that it did. There have been more than 700 photos posted to Facebook leading up to World Rare [...]

Filed Under: World Rare Disease Day Tagged With: Angels of Hope, blue denim ribbon, children's rare diseases, Global Genes Project, Patient Advocates, Rare Disease, Rare Pictures of Hope, World Rare Disease Day

Spooner Family Searches For Diagnosis For Daughters Rare Disease

February 8, 2012 by GGP Team Leave a Comment

Rick and Cristyn Spooner of Rancho Santa Margarita have fostered a dynamic husband and wife team both as business partners and in raising three beautiful children. Despite achieving success in operating their loan company, the Spooner’s have faced greater challenges and discovered even greater meaning [...]

Filed Under: Patient Stories Tagged With: children's rare diseases, Collaboration, Cristyn Spooner, Rare Disease, rare project, Undiagnosed rare disease, World Rare Disease Day, _Genetics

CNN Health – Mom claims in viral blog that disabled child denied transplant

January 18, 2012 by GGP Team Leave a Comment

(CNN) — Can a patient be rejected for a kidney transplant based on a developmental disability? A New Jersey mother alleges in her blog that this happened to her 3-year-old daughter, and it has sparked an Internet uproar. Whether a person with a mental disability [...]

Filed Under: News Tagged With: Amelia rivera, Children's hospital of philadelphia, children's rare diseases, CNN, kidney transplant, rare disorders, Wolf-Hirschhorn syndrome

Improving Drugs and Biologics for Children – Washington DC Briefing

January 12, 2012 by GGP Team Leave a Comment

The laws named the Best Pharmaceuticals for Children Act and Pediatric Research Equity Act, or BPCA/PREA, have resulted in over 400 drug labels. Be sure to check out the speakers at this event sponsored by BIO.

Filed Under: News, Policy Tagged With: BIO, Biotechnology Industry Organization, children rare disease, children's rare diseases, orphan disease, Rare Disease

Costs of Caring for Children with Rare Disease: Online Survey

December 19, 2011 by GGP Team Leave a Comment

The daily routines of those who care for children with rare genetic diseases are challenging. In his new book, “The Boy in the Moon,” Ian Brown describes his personal struggle to cope with his son’s diagnosis of cardiofaciocutaneous syndrome. Brown details how he learned to communicate [...]

Filed Under: Guest Bloggers, RARE Living Tagged With: cardiofaciocutaneous, Children with Rare Disease, children's rare diseases, cost of care, Counsyl, genetic counselor, Ian Brown, orphan disease, Rare Disease, rare disorders, The Boy in the Moon

Brad Paisley Lends Voice to New Song "Hard Life" to benefit A-T Children’s Project

December 13, 2011 by GGP Team Leave a Comment

Brad Paisley sings new song written by Joe Kindregan, A-T patient BRAD PAISLEY LENDS VOICE TO NEW SONG “HARD LIFE” Written By Joe Kindregan To Benefit A-T Children’s Project NASHVILLE, Tenn. (Dec. 12, 2011) Brad Paisley has just recorded a new song, “Hard Life,” available for [...]

Filed Under: Foundation Partners Tagged With: a-t children's project, Ataxia Telangiectasia, Brad Paisley, children's rare diseases, disease, hard life, orphan disease, rare disorder

Enter to win an iPod Touch through the EveryLife Art Contest!

November 15, 2011 by GGP Team Leave a Comment

Easy to enter! Just upload a photo of your art on RareArtist.org and you could win an iPod Touch! We accept art in all forms: Painting Photography Mixed Media Collages Pottery Sculptures PRIZES: Two Grand Prizes will be awarded in each age group: Children 5-11: [...]

Filed Under: Foundation Partners Tagged With: children's rare diseases, Global Genes Project, Kakkis EveryLife Foundation, rare disorders, rareartist.orf

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!

Contact Global Genes

28 Argonaut, Suite 150
Aliso Viejo, CA 92656

(+1) 949-248-RARE (7273)

Email Us a Question

More Contact Info Here

Hope Begins With You