Connect with FPIES Foundation for World Rare Disease Day

Organization
The FPIES Foundation

Location of Event
Online

Relevant Website
https://www.thefpiesfoundation.org

Rare Disease | Genetic Condition
Food Protein Induced Enterocolitis Syndrome

Date of Event
02/28/2014

Name of Event
The FPIES Foundation Rare Diseases Day Online Events

Event Details
We are not alone. Here at The FPIES Foundation that is something we feel every parent and caretaker should realize. Not only are there other families dealing with the same challenges FPIES poses, but if you add in other families also dealing with a rare disease the numbers are staggering. Our diseases are different, but many of our struggles are the same and together our voices are strong and clear. Rare Diseases Day is a great way to let decision-makers know about the challenges and impact facing a family dealing with a rare disease like FPIES.

So, just how can you join with The FPIES Foundation to get involved?

-Download and display RDD logos- Share that you care and “I love someone rare” customizable logo’s from Global Genes. Rare Diseases Day Logos from RDD.

Join Hands
Raise and Join hands to show your solidarity with rare disease patients around the world!
1.) Print out the RDD logo, or create a craft of what joining hands in solidarity means to you.

2). Take a photo of you in your location, upload photo to: Rare Diseases Day join your hands, directly, or Handprints Across America as part of Rare Diseases Day USA, or Simply share it with The FPIES Foundation on Facebook!

-Show support in Social Media
Join us on Facebook and ‘like” Rare Diseases Day and Global Genes Project.
Retweet and share rare disease news from Rare Diseases Day and Global Geneson Twitter, use hashtags #raredisease, #Careaboutrare and #WRDD2014

Check in on YouTube: Watch the videos, comment and link to the many videos and upload your video to the Rare Disease Day channel.

-Tell your story
Sharing your story gives a voice to the diagnosis. There are several ways to do this:

1). FPIES Foundation Inspiring Family Stories page – Sharing both our trials and successes gives a voice to all those struggling with this invisible diagnosis, and is a valuable tool for other families as well. This is a unique opportunity for families to learn from one another and continue to grow together as a supportive community. Write to us [email protected] for more information on joining the Inspiring Families!

2). With Rare Diseases Day directly – upload your photos, video or submit story here.

3). In a “Patient Letter to Representative” – fill out the form and fellow rare disease advocates from Global Genes Project will hand deliver your personal story with your “legislative ask” to your members of Congress. https://rareadvocates.org/

-Follow our blog for more information on how you can “Join Together for Better Care”