Create a Conversation about FPIES for Rare Disease Day 2016!

On Feb. 29, 2016, Rare Diseases Day gives us the opportunity to raise our voices for FPIES in solidarity with all rare diagnoses.  The theme for this year is “Patient Voice”, recognizing the role that patients have in voicing their needs, driving change to improve the lives of those living with FPIES and their families.

A rare disease is defined as “rare in the USA when it affects fewer than 200,000 Americans at any given time. A disease or disorder is defined as rare in Europe when it affects less than 1 in 2000. ” (Rare Disease Day)  

As we honor this day, we encourage you to create a conversation about rare diseases:

• Promote awareness by sharing awareness materials and talking to your family, friends, caregivers, healthcare providers, daycare, schools, and more about FPIES. 
• Share your story with your local news and on our Inspiring Families page. 
•           Participate in patient  surveys by signing up for the FPIES Global Patient Registry to be sure your child’s voice is part of FPIES research. 
• Advocate for rare disease by teaching someone about FPIES or joining efforts with your state legislature. 

Need ideas for starting the conversation? We can help! Need materials to share?  We can help with that too! 

Still looking for more ways to get involved?  You can: 

• Join hands
  

• Create a social media profile picture frame  and share it with us for our social media album

• Tell your story on Rare Disease Day and Global Genes  to be published.  

Whether on-line or in person, arm yourself with the materials you need to start the conversation and continue to build awareness to this rare type of food allergy.  

Join us in making the voice of those living with a rare diagnosis, such as FPIES, heard!

Wanting to learn more information about rare disease statistics in general? Visit Global Genes or RareDiseaseday.org pages to get informed and download their RDD materials.

This post was written by the Executive Board with approval of the Medical Advisory Board of The FPIES Foundation. 

Rare Diseases Day 2015: Living with a Rare Diagnosis

Every year, we participate with the Rare community to celebrate Rare Disease Day! This annual global event on the last day of February aims to, “raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives”. (What is a Rare Disease)

The theme for Rare Disease Day 2015 is, “Living with a rare disease: Day-by-day, hand-in-hand”.  In honor of this, we asked the community to give one word to describe what living with FPIES means.  We received numerous impactful responses, demonstrating our strong solidarity as a community.

How can you get involved? 

1. Download and share Rare Disease Day communication materials! Share your awareness of Rare Disease Day with your online community, utilizing logo’s, banners, badges, and social media profile pictures.

• Global Genes – Global Genes has “I love someone RARE” profile pictures again this year; you can upload your child’s photo for this unique profile picture, or simply use one of their other profile pictures and banners for your social media profile.  Also be sure to share your pictures with us and Global Genes on social media!
• Rare Disease Day -  Rare Disease Day has the official logo and countdown ticker to add to your blog or website as well as posters and banners to show your support of this day.
• The FPIES Foundation – visit our website and Facebook Rare Disease Day Event page to click and share banners, logos, and profile pictures created just for Rare Disease Day awareness of FPIES.

2. Share FPIES awareness materials in your online community – visit our website and Facebook album to share these flyers online. 

3. Share your family story of what living with FPIES means to you. Sharing your story shares awareness, and awareness is key!

• Read and share Inspiring Family Stories.
• Write to us at contact@thefpiesfoundation.org on how to get your story published on our Inspiring Families pages.
• Provide an update to a story we have already published!

4. Distribute Awareness Materials in your local community – at the doctor’s office, at daycare or school, at your playgroup. Download, print and share these flyers in your community: 

5. Start the Conversation!  An awareness conversation does not have to be formal or lengthy. Some great settings include but are not limited to moms’ groups, breastfeeding support groups, new parent education groups, staff meetings (at schools,nutrition clinics, etc). Pick a setting that is meaningful to you and then make a call!

6. Participate in or host an awareness event in your community!

• Support group meeting- get together and share what it is like to share a rare diagnosis. “You are not alone”. 
• Fundraiser event – host a walk, host an FPIES awareness event, initiate a wear jeans at work day fundraiser, or participate in ongoing online fundraisers. 
• Participate in Give Rare Day March 3^rd, a Global Genes Initiative that benefits non-profits.

7. Wear your awareness materials!

• Café Press Foundation gear - “Rare But Real” t-shirts, with thanks for the original design by Crystal Martin, these t-shirts are now available through the Foundation Café Press store.  
• Be Brave Bravelets - Wear your FPIES Brave when you purchase a piece of Bravelet jewelry from the Foundation’s page. With every Bravelets purchase from our page, $10 will be donated to The FPIES Foundation, to advance our cause for education, advocacy, outreach and research.
• Global Genes Ribbon - The Blue Denim Genes Ribbon logo, from Global Genes, has become an internationally recognized awareness symbol for rare and genetic diseases.

8. Rare Disease Week on Capital Hill - participate in your community's legislative events

• NORD encourages individuals to plan activities at their state capitol or state house to help raise awareness of rare diseases issues that are relevant at the state level. - See more at: Rare Diseases Day State House Events 
• Rare Disease Day on Capital Hill with Global Genes

9. Check out Global Genes & Rare Disease Day websites for additional resources!

• Global Genes
• Rare Disease Day 
  

10. Follow our Website News and Events and Social Media for Foundation Activities honoring RDD

• Follow us on Facebook and share awareness materials 
• Follow on Twitter, #Living with FPIES #WRDD15 #Careaboutrare 
• Join our online events for RDD 

This post was written by the Executive Board of The FPIES Foundation 

Rare Diseases Day Awareness Success!

Food Protein Induced Enterocolitis Syndrome (FPIES) is a recognized rare diagnosis - globally.  From Rare Diseases Day, "A rare disease is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time, and rare in Europe when it affects fewer than 1 in 2000".

"Alone we are rare, together we are strong" speaks volumes for this rare allergy.  As we look ahead to Food Allergy Awareness Week - a time of allergy communities, families living with allergies, and medical providers work together to bring increased awareness to food allergies, while raising awareness to this rare type of food allergy, we want to thank all of YOU for the success of awareness raised during Rare Diseases Day! 

"Join Together for Better Care" was the international theme for 2014 Rare Diseases Day. 

The FPIES Community joined together and got involved in several ways: 

• You shared how you care! The FPIES Community shared how they care, in our social media pages – these were compiled in a blog post. 

• You read and shared "Caring for the Caregiver" by The FPIES Foundation guest blogger, Dr.Nichole Huff. 

• You raised & joined hands!  Families and friends printed, colored, and created photos with Rare Diseases Day themes. Honoring the day with photo submissions on our Facebook page for increased awareness of this rare food allergic syndrome “looks” like.  You can see several of them on our Kids in Action page!  Others submitted directly to Rare Diseases Day 

• You raised awareness in social media - changing profile pictures to honor the day with Rare Diseases Day USA handprints logo or I Love Someone RARE Global Genes customized logo, and sharing the Foundation Rare Diseases Day banner (pictured below), Twitter messages (link) about honoring the day and sharing photos, several blog posts written and shared. 

• You shared your story – FPIES Foundation Inspiring Families page grew with the latest submissions while others submitted directly to Rare Diseases Day: 
• My Son’s Journey with FPIES 
• FPIES from the UK
• Our Little Man and FPIES 

• The FPIES Foundation is honored to be listed among the rare diseases advocacy groups on the Friends of Rare Diseases Day page. 

• Participation for rare diseases like FPIES during a Rare Diseases Day chat on Twitter "Conquering Rare Diseases", a tweetchat with ABC News' Dr.Richard Besserwith.

•  Maureen Gantt, a parent of a child with FPIES even involved her entire class!, "...on this [RDD] day we researched what it means to have a rare disease, and wrote a paragraph about it, and then they each drew the hand logo on their poster. Then their job was to take their poster home and read their paragraph to their families!!"  Thank you Maureen! 

• The FPIES Foundation was honored with several Rare Diseases Day fundraisers for FPIES awareness with donations to benefit the mission of The FPIES Foundation.  Thank you donors!! 

• The FPIES Foundation Co-Director Amanda LeFew was interviewed for this two-part series in Psychology Today: "What You Can Do Today to Stop Misophonia Suffering" and "What You Can Do to Stop Miso Suffering Part II"

• The FPIES Foundation is a partner organization with Rare Diseases Day and our events were listed on their events page, for increased awareness to this rare food allergy.   

• Through our Foundation Alliance with Global Genes, "Connect with The FPIES Foundation for Rare Diseases Day Events" was published on their website, bringing FPIES further global recognition.

One of the biggest strengths of the FPIES community is the support and compassion shared by its members.  Your involvement in Rare Diseases Day once more upheld these values and our community's dedication to one another.  Truly, as we move ahead to Food Allergy Awareness Week in May, we will continue to be a community that is not only rare in diagnosis, but also rare in it's profound advocacy, empathy and commitment to bettering the lives of those affected by FPIES, each and every day. 

This post was written by the Executive Board of The FPIES Foundation 

Join Together for Better Care: Rare Diseases Day 2014

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: 
• Rare Diseases Day 

• NORD 

• Global Genes 

• 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.  

• 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 to HandprintsAcross America, as part of Rare Diseases Day USA. 

• Show support in Social Media:

ü  Join us on Facebook and ‘like” Rare Diseases Day and Global Genes Project. 

ü   Retweet and share rare disease news from Rare Diseases Day and Global Genes on Twitter, use hashtags #raredisease,  #Careaboutrare and #WRDD2014 

ü  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:
• 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 contact@thefpiesfoundation.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:

World Rare Diseases Day 

Rare Diseases Day USA 

Global Genes

This post was written by the Executive Board of The FPIES Foundation 

Your voice: Be a part of the first FPIES Global Registry!

Your voice: Be a part of the first FPIES Global Registry! 

A message from Joy Meyer, Co-Director of The FPIES Foundation 

You are more accustomed to hearing from The Foundation as a whole rather than me as an individual voice.  I am the Co-Director of The FPIES Foundation.  I am one of the moms who founded this Foundation inspired from this incredible online community of families affected by FPIES. It didn't take long after I joined the online support groups (just weeks before my own son was diagnosed with FPIES, in the spring of 2010) for me to see the dire need for these voices to be heard, to be collected in a reliable, medically responsible ‘home’.   The voices offering resources, sharing tools, providing support, and empowerment to one another. And, most importantly, the voice of our children, and what having this allergy meant to their development, to their ‘relationship with food’, their quality of life living everyday with a rare and often misunderstood diagnosis.

Being in the medical field myself, I not only saw that the child’s voices needed to be heard but that the voices from ‘other side of the door’ as well; the voices of the very medical providers caring for our children.   To help their patients, practitioners want to provide the best care but not knowing enough about FPIES or where to turn to learn more about this little known allergy, can be as frustrating for a provider as the families living with it looking for answers to best treatments and management.   

We saw the necessity to build a strong foundation for these voices to be heard.  We knew we would not only need a non-profit foundation with a medical advisory board of health professionals compassionate and knowledgeable in FPIES to provide medical advisement, we would need the voices of the families to be strong, to be collaborative in the research and best practice guidelines of this often misunderstood diagnosis.   We recognize the importance of bringing awareness to the diagnosis while building a growing, solid, foundation of resources, tools and support for living with FPIES today; all while working towards the novel, and continued, research that we know this diagnosis that still perplexes many, needs.  

We also know that for recommendations to be built on evidence-based medicine (medicine that looks at several studies and repeated research before drawing conclusions for recommendations and protocols), it will be necessary for good quality research to be presented by several researchers of various facilities. This will help to assure that the widest range of symptoms are addressed and the best evidence-based recommendations can be developed for improved management of this allergic syndrome in the future.

From our inception, we established an ongoing relationship with REGID (Registry for Eosinophilic GastroIntestinal Disorders) to further educate ourselves on the requirements of a registry for FPIES.  Recently, through our Foundation Alliance with Global Genes, we have been introduced to the importance of our collective voices to the rare diseases community, globally, in the National Institutes of Health Global Rare Disease Registry.  We are excited to introduce FPIES to be among those collective voices for rare disorders. 

Your voice, the voice of your children and your family, will facilitate the evidence gathering that is a vital piece to research.  Several families have expressed my same thoughts over the years, “…if only a researcher could read some of what families share, and the patterns parents see on the support group pages…”  We have always recognized that a vital place for evidence gathering begins in the community, from the families living with this diagnosis.

So, how do we connect families with researchers?  How do we help providers help families?   How do we get the voices of all the various concerns, multiple symptoms, and daily struggles from the support groups to the researchers?   A patient registry! In partnership with Patient Crossroads CONNECT program, a program from the National Institutes of Health Global Rare Disease Registry we are honored to release our latest initiative: The FPIES Foundation Global Patient Registry.

I am just one voice in this community--- your collective voices ARE the Foundation. Each voice-- your voice!!-- is crucial for FPIES studies today, to guide new research for tomorrow. The symptoms and unanswered questions of our children's experiences with FPIES will be heard, recognized and researched further to develop protocols for future treatments and new developments in management and care of our children today. It all starts with ONE-- take a moment and add your child's voice.

Connect to FPIES Global Registry 

Registered families receive notifications when new surveys are posted. 

For more news on the FPIES Foundation Global Registry, see our press release: FPIES News & Events. 

The FPIES Global Patient Registry

• This registry is operated on the Patient Crossroads CONNECT platform and adheres to the Patient Crossroads privacy policy and terms of use.
• For questions regarding the registry’s privacy policy, terms of use, and/or any other questions regarding the FPIES Global Patient Registry, please email us: contact@thefpiesfoundation.org.

This post was written by the Executive Board of The FPIES Foundation