World Rare Diseases Day February 28, 2014
Rare Disease Day 2014 focuses on care and encourages everyone in the rare disease community to
Join Together for Better Care.
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.
Rare Diseases Day 2014 is fast approaching and this year we encourage the FPIES community to join your voices with these other families. Our diseases are different, but many of our struggles are the same and together our voices are strong and clear.
Rare Diseases Day was created and is coordinated internationally by EURORDIS. It was started by patient organizations and continues to be patient led. It is a great way to let decision-makers know about the challenges and impact facing a family dealing with a rare disease like FPIES.
Did you know there are 6000 different rare diseases affecting over 60 million people across Europe and North America alone??? EURORDIS tells us, “Most of these diseases are genetic, serious, chronic and debilitating. Each disease is different, but they affect people in similar ways. Experience shows that bringing together scattered knowledge and resources for people living with rare diseases is the most efficient and effective way to mobilize the care patients and families need and deserve.”
How Can You Get Involved?
- Download and display RDD logos:
2. Wear that you Care:
“The Global Genes Project is one of the leading rare and genetic disease patient advocacy organizations in the world. The non-profit organization is led by Team R.A.R.E. and promotes the needs of the rare and genetic disease community under a unifying symbol of hope – the Blue Denim Genes Ribbon™”. Get your Care about Rare ribbon here.
3. Join Hands:
Raise and Join hands to show your solidarity with rare disease patients around the world! . Upload your photo directly to RareDiseases Day, share it with us on FB, or send to us for FPIES Community display submission toHandprintsAcross America, as part of Rare Diseases Day USA.
4. 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 Genes on 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.
5. Tell your story:
- 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 at firstname.lastname@example.org for more information on joining the Inspiring Families!
- With Rare Diseases Day directly – upload your photos, video or submit story here.
- 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.
- Involve your local Media – write and share your story and what Rare Diseases Day means to you. The media is the best way of reaching the general public and serves to shape the opinions that will convince policy makers.
For more ways to get involved:
This post was written by the Executive Board of The FPIES Foundation.