Ruth O.


"I'm with you all the way, Nadia. Good luck and more power to you!"

Katsiaryna B.


"It is important to increase the awareness and to stay United as a community and help one another"

John S.


"Here's to a cure, George!"

Jessica P.


 "Love you George B! 
Love, Jessie P <3
#staystrong"

Aelicia B.


"Happy to support a great cause. Good luck!"

Monica R.


 "Keep up the good work :)"

Christopher M.


" In memory of Caroline! Sue L"

Mary O.


"Please share this information and let's get it built."

Melanie R.


 "Love you Mandy!!"

Nicole T.


"Wishing you all the best. You'll be in our thoughts and prayers!
-Nicole Tagliareni"

Kyle A.


"signing for dave and george!"

Maryellen M.


"Best of luck with everything! I'm praying for all of you, and I hope a cure is found!"

Carey F.


"In honor of Caroline Cauley"

Steven F.


"For George"

Nestor S.


"Hopeful that the cure to this rare genetic condition is on the horizon."

Laurene E.


"For Rosine's Son George"

Jason D.


"Praying for your full recovery George!"

Michael L. W.


"My donation to EDSers United is in support of the EDSer I know."

Megan W.


"For Uncle George xoxo Coraline"

Jennifer P.


"We love you George and we are praying for a cure."

Jason S.


"For research for EDS"

Ellen S.

"May we find a cure soon - we deserve better quality of life!"

Rosa O.


"Praying for your son George"

Carol F.


"May God bless those who suffer with this disease. Please help to find a cure.
-The Fantacones"

Melanie L.


"Thank you for providing an avenue to help spread the word and move us closer to finding a cure!"

Scot M.


"Love you George"

Juliette H.


"Bravo Rosine! Lets Find a Cure!"

Vedat Y.


"For Rosine's Son George"

Manouk T.

"Lets find a cure"

Anna B.


"Prayer for a cure"

Marybeth C.​


"In memory of Caroline Cauley."

Shun C.


"In support of Rosine's Son George"

Marjorie V.


"For George"

Michelle O.


"Glad to help in finding a cure. God bless you all. From the Ortiz family."

Lori M. P.


"Such a great cause!"

Janice W.


"My hope is that a cure will be found for all who suffer from this disease!"

Veronica D.


"Love you George! Roni"

Nicholas W.

"For Tania Barone's brother"

Anastasia M.


"Stay strong Zebras"

Kylie W.


"Stay strong Kylie, Brie, and Tyler!"

Pallavi A.​


"EDS is not fun, we feel your pain.praying fir all the success and help this Institute can provide."

Francis P.


"For Eric Wang"

Marshall R.


"For Tania Barones brother."

What Can You Do To Help?


Please, show your support by Pledging a $10 donation.


There are currently 7000 different types of rare diseases and disorders, none of which have a cure, several of which don’t even have a treatment option. To provide you with the sense of how many people your Pledge will help, if all of the people with rare diseases lived in one country, it would be the world’s 3rd most populous country. This is very important and we really need your help and support. All of you who Pledge will be invited to our ribbon-cutting ceremony! And you will truly be making a difference.

With your support, we can raise the funds needed to make the development of WIRC a reality. Every single Pledge donation goes directly into the cost to construct and develop the physical building itself. Not one penny is going into paying our team a salary. We are all volunteers, volunteering our time, energy, personal funds and professional expertise in order to get the doors to the Wellness Institute for Rare Conditions open. 


Imagine finally being able to go to one facility where you can be diagnosed, managed and offered state of the art treatment options. And even better, you’ll be supporting ground-breaking rare disease research...research that can lead to better treatments, better qualities of life, hope for our future and the future of our children. 


Please, Pledge your support today. We and the future of the rare disease community are forever grateful for each and everyone of your pledges! ​

George B.


"This Center will be a beacon of hope for all people who suffer from Ehlers-Danlos Syndrome. Please spread the word to Family, Friends, & Colleagues. We need more support!"

Nicholas R.


"For George B."

Mary G.


"God Bless everyone."

Richard W.


 "Good Luck"

MaryPat S.


"In rememberance of Caroline Cauley."

Nella C.

"To our wonderful cousin George Barone"

Robert O.


"Thank you"

Nicole P.


"Hope this helps, Love Nicole Palma and Ron Goykhman"

Giorgio C.


"To our wonderful cousin George Barone"

Daniele M.

 "For all who suffer with Rare Diseases"

Star S.


"Zebras unite! Hopefully on the West Coast someday, too!"

Zachary M.


"For George and Dave. With love ZPM"

Jean L.


" For Hope for everyone with rare diseases and for George who inspires us all"

Michael R.


"#lovegeorge #kswiss #accessroad"

James A.


"For our Friend Rosine's Son, George"

Robert M.


" Hoping for a cure"

Jon R.


"My best to the success of the new center!-Jonathan Rodis-Co-leader EDS NE/MA Support Group"

Mary M.


" For George"

Brunilda Vazquez


"For Nadia my Granddaughter."

Robert W.


" I want to help my friend George Barone and all who suffer from this awful condition"

Donna D.


"In memory of Caroline Cauley, a beautiful young woman gone too soon"

Jessica S.


"In support of the Evans Family."

Lauren G.


" Let's find a cure!"

Questions and Answers


What is the mission of WIRC?

Our mission is to advance research, improve diagnostic tools, establish efficacious and cost-effective treatment and management protocols for underserved rare genetic conditions, and provide high quality, comprehensive health and wellness services to the “whole,” medically complex patient in order to achieve a maximum level of wellness. Our clinical vision is to assist with complex rare genetic conditions, diseases, and illnesses and optimize outcomes by providing quality-driven, efficient and responsive health care services that meet the needs and expectations of the rare disease community we serve. At EDSers United we set high standards of performance for ourselves and for others. Our research vision is to develop and deploy cutting-edge science to understand rare genetic conditions, establish efficacy of promising treatment options, and to engage diverse stakeholders in conversation about solutions to advancing these rare genetic conditions

Where will the Center be located?

WIRC will be located in Northern New Jersey, near public transportation and major highways. We will ensure an area is chosen with sufficient lodging options. 

Is EDSers United a nonprofit organization? Why are you now focused on developing a medical and research center?

EDSers United is an incorporated non-profit public charity that was founded in 2010. Our EIN number is 45-2918197. Our team is composed of patients, caregivers and health care professionals. Because there are several established non-profit (both private and public) that are currently effectively advocating for the EDS community, we feel the time is right to shift our focus. To learn more about our history, 
Click Here


Will you still be involved in community outreach and support?

Yes. We will continue our monthly community support program. We understand how important it is for programs such as awareness efforts, community outreach, educational programs, and conferences to continue. We plan to work with and support organizations established around the world dedicated to the rare disease cause, who do an excellent job at providing the community with effective support programs. Because WIRC will be focused on research and clinical science, WIRC will support the efforts and successful community programs of patient advocacy organizations like Global Genes and the EveryLife Foundation through the distribution of grants so that rare disease awareness campaigns and support efforts can continue to grow and flourish.

How will you encourage health care professionals to become Rare Disease Experts?

We have already developed a strong network of health care professionals and scientists, and we will continue to develop that network. One of our goals is to develop a grant program to provide scholarships to pre-med students, contingent upon their acceptance and attendance into the medical school of their choice, with the requirement that they specialize in treating and/or researching rare genetic conditions. This will help assure young professionals will be knowledgeable and available to treat patients with these rare genetic conditions. Established health care professionals will also have the opportunity to shadow the health care professionals that work at WIRC. 

Dana W.


"Please help find a cure for this disease!"

Daniel Nieves


"For my best friend's Daughter, Nadia."

Nancy T.


"Lets find a cure"

Mateo V.

" We miss you Caroline. -- Your cousin Mateo"

EDSers United

                   

                     #EDSersUnited

                     #WIRCforRare 

Yoony P.


"I'm signing this in support of my best friend George Barone who I love with all my heart"

Daniel H.


" I love you so much, Mandy - stay strong xoxo"

Joseph H.


"Make it known!"

Moises H.


"Best of luck raising the full amount!"

Sharon T.​


"In memory of Caroline Cauley."

Edward C.


" I support you, George!"

Davy A.


"#CureForEDS"

Richard P.


"Good luck"

Edward S.

"In Support of Rosine's Son"

Linda T.

"For Rosine; Fighting for her son George"

David C.

"Good Luck"

Anonymous

"This will extend medical knowledge to recognize and treat Connective Tissue Disorders."

William N.


"to our relative, George"

Sebastian V.

"For the Cauley family. Love from Sebastian"

Richard R.


"Stay Strong"

Sean I.


"please find a cure"

Danielle H.


"I am donating in honor of my best friend George."

Kevin C.


" In Memory of Caroline Cauley"

Krista W.


"For Rosine's Son George, I hope you find a cure"

Monica L.


"This is for you George!!!"

Brandon S.


"Kylie & Zebras alike: May you one day find yourself cured and no longer bound by shackles of agony."

Farley Balan


"For my best friend's Daughter Nadia."

Garry P.


"Caroline was taken her from family and friends at such a young age."

Brenda Y.

"Let's get this well needed center up and going"

Cara N.


"This is for George."

Eric Werner and KDF Electronics and Vacuum.


"In Support of Adam's lovely daughter, Nadia."

Sam V.


"For my cousin Caroline. We will continue your fight. --Sam"

Meghan L.


"Prayers for a cure."

Mandy H.


"Thank you. This will be life changing."

Pamela H.


"For George Barone"

Manuel H.


"Keep Fighting For your son Rosine!!!"

Kim Z.

"For Caroline"

Susan V.


"In Memory for Caroline. Cindy Miglin"

Tracy L.

"Zebra Strong! -The Lowanse Family"

Joe H.


"Good Luck."

Christina B.


"For my Cousin George Barone"

Sonia B.


"For George"

Laura M.


"For George Barone"

Mindy H.

"Audrey & Abby, don't let pain stop you from living, loving and laughing. You are more than EDS."

Lisa C.


"Good Luck"

Alyssa M.


"Love you Mandy!"

Mary J.


"In loving memory of the beautiful Caroline C.
Praying for a cure! MKJ"

Angela P.


"For Rosine's Son George, Best of Luck with the Center!"

Rodrigo S.


"Lets do this!"

Lisa R.


"In support of Lisa and Mandy- hoping for a cure!"

Michael Z.


"For Caroline Cauley, from Kim Z."

Dr. M.


" For all of my patients."

Antonio Vazquez


"For my niece Nadia."

John D.


"Good Luck"

Christopher B.


"Good luck, George!"

Susan V.


"Keep going..."

Stacey H.


"Love this! It's SO important."

Anil B.


" Good luck in you efforts!"

Christopher K.


"Praying for this effort to help find a cure."

Lauren C.


 "For George"

Our Cousin George Barone is a wonderful human being and our family loves him very much! We hope that in the near future a cure is found so that all EDSer patients can be free of pain and have hope in the future! Aloha with Love, The Crescione & Caldarone Family

Copyright 2010-2016. EDSers United. All Rights Reserved.

Laura D.

"From the Missouri and Illinois EDSers facebook support group, THANK YOU for your hard work."

Peter A.

" I am donating to support my friend George Barone"

Patricia C.


"For Caroline"

Lauren L.


"Hope this helps this important cause!"

Leonard C.

"For Rosine Barone From Leonard & Maria"

Judy F.


"i am a supporter"

Tracy S.


"I look forward to this center opening in NJ."

Helene M.​


"We are eager to support this endeavor."

Joseph G.


"This donation is dedicated to Tania Barone's Brother George...I hope you find a cure!"

Meghana P.


"This is a great organization!"

James C.


"Good luck in your effort to raise awareness."

Jeffrey Z.

"For the struggle of my amazing wife Kelly, & children Rach, Aaron, Zach, Isaac, Abbey, Noah, Emma"

Gert V.


"In memory of beautiful Caroline"

Gloria V.

"In memory of my niece Caroline - we love you!"

UPDATED - July 12, 2016

The Wellness Institute for Rare Conditions (WIRC): 

A Treatment and Research Center for Rare Genetic Conditions


Brand New State of the Art Facility Focused on Finding Effective Treatment Options and Cures for Rare Genetic Conditions


​EDSers United is spearheading the creation of a brand new facility which will house both medical professionals and scientists who will be focused on diagnosing, treating, and managing patients with rare genetic conditions, in addition to establish efficacy and safety of treatment protocols and performing scientific laboratory research that will aid in the development and establishment of effective treatment options, with the goal of discovering cures.


The center of excellence facility is to be called The Wellness Institute for Rare Conditions (WIRC) and will include a health and wellness clinic designed to provide comprehensive medical care to patients born with rare genetic conditions.  It is our goal to have a number of different medical professionals at WIRC with various specialties, including but not limited to geneticists, primary care physicians, physical therapists, cardiologists, etc. By housing a variety of medical professionals, patients will be able to address many of their complex medical needs in one place and receive more efficient and coordinated care.  Our aim in developing the wellness center is to identify and combine the best of Western and Eastern medicine and to establish the efficacy and safety of promising treatment options indicated specifically for rare genetic conditions. 

WIRC will include four laboratories staffed by researchers dedicated to making groundbreaking discoveries, with the eventual goal of developing the science that will lead to several cures. It is very important to us that our efforts unite everyone in finding effective treatments and cures.  Working together, in collaboration and unity, benefits everyone. 

Patients treated at the Center will have the opportunity to provide blood and tissue samples, and receive full genome sequencing, of which the results will be utilized by our scientists in their work. 

While the primary focus of the Center will be rare genetic conditions, we truly believe that the work we do and the scientific break throughs we develop will provide the basis for improvements in treatments for the more common diseases. 


Over the past several months, the staff here at EDSers United has been meeting with possible sponsors, including pharmaceutical companies, and healthcare providers to develop support for the Center.  The response has been very encouraging! EDSers United is dedicated to establishing this center of excellence for rare genetic conditions and has no plans of stopping any of our efforts to develop this center. All funds go directly to funding the costs to develop WIRC.

Eric W.


"Happy to offer my support. - Eric Wang"

Christopher P.


"This is for our friend George."

John C.


"Prayers for George!!"

Scott O.

"In memory of Caroline"

Marc L.

"For Rosine's Son George. I hope this helps"

Barbara M.


"For Rosine Barone's Son, Praying for a cure"

Rishi G.

"Good luck in the search for a cure"

Susan M.


"Wishing you good luck!"

Raulito and mother Maria Velazquez


"For our cousin and his daughter Nadia."

  • Dyson P.
  • Jinny P.
  • John M.
  • Anna Maria N.
  • Kathi O.
  • Robert S.
  • Dana L.
  • ​Brian L.
  • Daniel Nieves
  • ​Mary G.
  • Christa D. 
  • Brian G.
  • ​​Susan V.
  • Susan C.
  • Garabed K.
  • Elizabeth L.
  • ​Thomas H.
  • Sonia A.
  • Elena K.
  • Nelly K.
  • Paul K.
  • Hind S.
  • Joseph S.
  • Giorgio C. Jr.
  • Cassie C.
  • Joseph C.
  • Mary J.
  • Jackline C.
  • Julia C.
  • Anthony C.
  • A.J. C.
  • Baizar H.
  • Lou H.
  • Joseph D.
  • Rose M.
  • Silva M.
  • Amine M.
  • Norman B.
  • Dr. Joan B.
  • Elise K.
  • Lorie R,
  • Ashley S.
  • Jose L.
  • Andrea Z.
  • Rebecca C.
  • Valentin F.
  • Melissa Y.
  • Vernie B.
  • Jennifer K.
  • Julia C.
  • Maria I.
  • Christina B.
  • Jacqueline T.
  • Jamie H.
  • Joe S.
  • FJ D.
  • Jihaan M.
  • Kavita G.
  • Michael K.
  • Dachuan C.
  • Gloria V.
  • Erica Evans
  • Gagandeep singh Bala
  • Anonymous
  • Fehmi A
  • Nusel A.
  • Anonymous
  • Ray T.
  • Adam V.
  • Anonymous
  • Philip & Marilyn G.
  • Barbara K.
  • Anonymous
  • David H.
  • Dona M.
  • Paul B.
  • Anonymous
  • Thomas Q.
  • Anonymous
  • Liz T.
  • Patricia S.
  • Anonymous
  • Jocelyn S.
  • Claudia A.
  • Gulperi K.
  • Anonymous
  • Heather M.
  • Kylie W.
  • Chris O.
  • Sean C.
  • David T.
  • Jessy P.
  • Anonymous
  • Jon W.
  • Val M.
  • Mathew Kriley
  • Sarah G.
  • Maryann K.
  • Alice N.
  • Cynthia M.
  • ​Regina F.
  • ​Brittany J.
  • ​Rakesh S.
  • ​James L.
  • Larry G.
  • Thomas L.
  • Katia K.
  • Silva B.
  • Robert T.
  • Willy O.
  • Constita O.
  • Judy O.
  • Mary M.
  • Harold M.
  • Fran M.
  • Dolores W. 
  • ET D.
  • Lorraine D.
  • Sonia A.
  • Julia H.
  • Albera S.
  • Anita Q.
  • Louis H.
  • Angelina T.
  • Christine E.
  • Jason E.
  • Jody M.
  • Nancy B.
  • Sandra B.
  • Jeffrey Z.
  • Yue L.
  • Margaret M.
  • John F.
  • Steven G.
  • Sean C.
  • Amy R.
  • Melanie B.
  • Therese L.
  • Christine O.
  • Jeanne K.
  • Audrey H.
  • Howard L.
  • Nicholas W.
  • David M.
  • Arien T.
  • Rosemarie B.
  • ​Kevin D.
  • Palm P.
  • Anonymous
  • Dr. Nan Wise
  • Anonymous
  • Anonymous
  • Lorraine G.
  • Anonymous
  • Peter N.
  • Amal N.
  • Anonymous
  • Anonymous
  • Patricia M.
  • Anonymous
  • Margaret C.
  • Fuat C.
  • Anonymous
  • Hulya S.
  • Ted S.
  • Anonymous
  • Maria C.
  • Charlene D.
  • Anonymous
  • Leyla Y.
  • Anonymous
  • Denise S.
  • Robert E.
  • Lana E.
  • Pamela L.
  • Anonymous
  • Sharon F.
  • Evan Wang
  • Carey Martinelli
  • Carlos Sanchez
  • Ryan C.

Linda S.


"Let's figure this out and find a cure. In memory of Caroline Cauley."

Rong Z.


"For George Barone"

Alexis W-W.


"Good luck!!"

Rosie, Joe Ortiz and Family


"For my nephew's daughter Nadia."

Louis & Carol G.


"Helping to support a Dear Friend of our family"

Gil V.


"For my grandchildren"

Jeannine F.


"For Caroline"

Ashanthi D.

"To a better quality of life for all EDS patients. Thank you for making the future brighter."

Fiona S.


"Hope this helps"

Nuri K.


"For our Friend Rosine's Son, George"

Christopher M.


"Good Luck George!!!"

Laura B.


"For Rose's Son; George"

Allison H.


"xo - allison holzman"

Linda B.


"In memory of Caroline Cauley"

Linda G.


"In memory of Caroline"

Juan F.


"I believe in you Nadia and EDSers United. Let's make this goal a reality!"

Nicole M.


"All our best Dave and George."

Jennifer C.


"JennyPlusChris support this"

Flor Maria Velazquez, Daughter Ada Rodriegez and Family


"In support of our nephew/cousin's daughter Nadia."

Kristie E.


 "EDS needs this kind of support! Hope we are able to gather support to make this happen!"

Nancy M.


"Savanah you're such a brave and strong little lady. I love you."

Darcy T.


"This is for my girlfriend and everyone who shares in this battle."

Lucas W.


"For the Evans family, and all the families waiting to find a cure"

Christine S.


"Nadia, thank you! Your heart, your vision: amazing!"

Tania B.


"Proud of my brother George Barone, on the front line, helping to build a center to find a cure"

Lina T.

 "For Rosine; Fighting for her son George"

Jervel V.


"Prayers for a Cure"

Susan C.


"For George."

Fiona M.


"In support of the fabulous Maggie Leppert"

Official Supporters

of  

The Treatment & Research Center for

Rare Genetic Conditions

David S.

"I am very proud of you for building support for such a debilitating disease!"

Suzanne S.


" For Caroline"

Benjamin V.

"In memory of my cousin Caroline. Love from Benjamin"

Richard P.


 "For George. --Rich Page"

Robert B.


"Keep up the great work!"

Connie R.


"In remembrance of Caroline Cauley."

William W.


"Go George Go"

Joseph D.

"For Rosine's Son George"

Stuart S.


"Looking forward to a cure and help under one roof!"

Jacob I.

"Godspeed in the research & findings for treatment & cures."

Alicia F.


"Til there's a cure!"

Michael O.


"In support of Bryn O'Rourke"

Val Jr.


"In support of my niece Nadia."

Diane L. H.


"In honor of Caroline."

Cynthia C


"For Caroline with love"

Erika I.


"Love you George!! Erika & Chris"

Edward S.


"In Support of Rosine's Son"

Rob N.


"Hope you can help George"

Tom V.

" In honor of my cousin Caroline - we will work to find a cure!
-- Tommy"

Rachael L.


"Prayers to all!"

Mary T.


"For Sweet Caroline!!!"

Ann M.


"Thank you for the work that you do."

Beth M.


 "Looking forward to being part of EDSers future."

Lorraine A.


" I'll forward this to additional folks who I know will be more than happy to support."

Michael P.


"This is for George Barone."

Diana J.


"We Will Survive"

Anonymous

"Desperate for a cure. Gentle hugs and love to all who hurt."

Rosine B.


What can I tell you about my son George? There are not enough words to describe his qualities. Very thoughtful, kind, generous, and always willing to help others; even total strangers. I am the luckiest mom in the world to have my son George in my life. My life would be worthless without him. He is the love of my life. George, honey we will find the cure for EDS, even if we have to go to the end of the world. With God, all things are possible.    

Kelly Z.

"For all who suffer! Let's find a cure!"

Ashton D.


"For Eric"

F Gordon-Cain


"In remembrance of Caroline Cauley."

Debbie J.


"Hope you are well, Mandy!!"

Liying W.


"Thank you, Nadia and EDSers United, for all that you do to help the EDS community"

Anthony T.


"For Rosine's Son"

Merle K.


"I am signing this petition to show support for this treatment and research center"

Jennifer P.

" In support of George Barone."

Suzanne H.


"Educating providers will be key!"

Hirkani P.


 "This center will be a shower of blessings for nations"

Cindy B.


"Please help my family get the treatment they deserve!"

Tara W.


 "In support of George Barone. It is my honor to support you and EDS."

Casimiro Vazquez


"From EDSers United Supporters in Puerto Rico"

Joseph L.


"For George Barone"

Melissa V.


Praying for you to feel well!."

Ashley L.


"Good luck, god bless."

Zachary V.


"In memory of my cousin Caroline, our inspiration.
---Zack"

Amy N.


"Make it happen!!! people need your help --signed by Amy Neeren"

Silent Supporters

Joseph L.


"For George Barone. Heres hoping for a cure!"

Elizabeth M.

"Good Luck George XOXO!!"