Rob N.

"Hope you can help George"

Tom V.

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

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."

Official Supporters


The Treatment & Research Center for

Rare Genetic Conditions

David S.

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

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!"

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."

Eric W.

"Happy to offer my support. - Eric Wang"

Christopher P.

"This is for our friend George."

John C.

"Prayers for George!!"

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!"

Scott O.

"In memory of Caroline"

Marc L.

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

Daniel Nieves

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

Barbara M.

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

Rishi G.

"Good luck in the search for a cure"

Nancy T.

"Lets find a cure"

Mateo V.

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

Susan M.

"Wishing you good luck!"

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"

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! ​

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."

Peter A.

" I am donating to support my friend George Barone"

Giorgio C.

"To our wonderful cousin George Barone"

Meghana P.

"This is a great organization!"

Robert M.

" Hoping for a cure"

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"

Jessica S.

"In support of the Evans Family."

Lauren G.

" Let's find a cure!"

Carey F.

"In honor of Caroline Cauley"

Steven F.

"For George"

Lina T.

 "For Rosine; Fighting for her son George"

Jervel V.

"Prayers for a Cure"

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"

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"

Angela P.

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

Lucas W.

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

Nella C.

"To our wonderful cousin George Barone"

Robert O.

"Thank you"

James A.

"For our Friend Rosine's Son, George"

Tracy S.

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

Mary M.

" For George"

Robert W.

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

Gloria V.

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

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!"


"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"

Ashanthi D.

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

Fiona S.

"Hope this helps"

Manouk T.

"Lets find a cure"

Anna B.

"Prayer for a cure"

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"

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"

Daniele M.

 "For all who suffer with Rare Diseases"

Star S.

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

Michael R.

"#lovegeorge #kswiss #accessroad"

Brunilda Vazquez

"For Nadia my Granddaughter."

Donna D.

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

EDSers United



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."

Melissa V.

Praying for you to feel well!."

Ashley L.

"Good luck, god bless."

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"

Linda B.

"In memory of Caroline Cauley"

Linda G.

"In memory of Caroline"

Anastasia M.

"Stay strong Zebras"

Kylie W.

"Stay strong Kylie, Brie, and Tyler!"

Anil B.

" Good luck in you efforts!"

Christopher K.

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

Copyright 2010-2019. EDSers United. All Rights Reserved.

Helene M.​

"We are eager to support this endeavor."

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.

Casimiro Vazquez

"From EDSers United Supporters in Puerto Rico"

Joseph L.

"For George Barone"

Richard P.

 "For George. --Rich Page"

Robert B.

"Keep up the great work!"

F Gordon-Cain

"In remembrance of Caroline Cauley."

Jacob I.

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

Debbie J.

"Hope you are well, Mandy!!"

Elizabeth M.

"Good Luck George XOXO!!"

Nuri K.

"For our Friend Rosine's Son, George"

Christopher M.

"Good Luck George!!!"

Darcy T.

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

Christina B.

"For my Cousin George Barone"

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."

Laura D.

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

Jean L.

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

Jon R.

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

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"

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"

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!"

Tracy L.

"Zebra Strong! -The Lowanse Family"

Joe H.

"Good Luck."

Mindy H.

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

Lisa C.

"Good Luck"

Mary G.

"God Bless everyone."

Richard W.

 "Good Luck"

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

Zachary M.

"For George and Dave. With love ZPM"

Joseph G.

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

Joseph H.

"Make it known!"

Moises H.

"Best of luck raising the full amount!"

Sharon T.​

"In memory of Caroline Cauley."

Connie R.

"In remembrance of Caroline Cauley."

William W.

"Go George Go"

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!"

Stuart S.

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

Joseph L.

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

Kim Z.

"For Caroline"

Susan V.

"In Memory for Caroline. Cindy Miglin"

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"

John D.

"Good Luck"

Lauren C.

 "For George"

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.

Laura B.

"For Rose's Son; George"

Allison H.

"xo - allison holzman"

Veronica D.

"Love you George! Roni"

Nicholas W.

"For Tania Barone's brother"

Christopher B.

"Good luck, George!"

Stacey H.

"Love this! It's SO important."

Leonard C.

"For Rosine Barone From Leonard & Maria"

Susan C.

"For George."

Fiona M.

"In support of the fabulous Maggie Leppert"

Liying W.

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

Anthony T.

"For Rosine's Son"

Silent Supporters

Nestor S.

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

Laurene E.

"For Rosine's Son George"

Alicia F.

"Til there's a cure!"

Gil V.

"For my grandchildren"

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."

Sonia B.

"For George"

Laura M.

"For George Barone"

Antonio Vazquez

"For my niece Nadia."

Nicole P.

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

Lauren L.

"Hope this helps this important cause!"

Merle K.

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

Jennifer P.

" In support of George Barone."

Erika I.

"Love you George!! Erika & Chris"

Edward S.

"In Support of Rosine's Son"

Amy N.

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

Joseph D.

"For Rosine's Son George"

Ashton D.

"For Eric"

Marybeth C.​

"In memory of Caroline Cauley."

Shun C.

"In support of Rosine's Son George"

Manuel H.

"Keep Fighting For your son Rosine!!!"

Alyssa M.

"Love you Mandy!"

Mary J.

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

Dr. M.

" For all of my patients."

MaryPat S.

"In rememberance of Caroline Cauley."

Judy F.

"i am a supporter"

  • 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."

Cara N.

"This is for George."

Eric Werner and KDF Electronics and Vacuum.

"In Support of Adam's lovely 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."

Marshall R.

"For Tania Barones brother."

Susan V.

"Keep going..."

Patricia C.

"For Caroline"

Monica R.

 "Keep up the good work :)"

Christopher M.

" In memory of Caroline! Sue L"

Ann M.

"Thank you for the work that you do."

Beth M.

 "Looking forward to being part of EDSers future."

Linda T.

"For Rosine; Fighting for her son George"

David C.

"Good Luck"

Zachary V.

"In memory of my cousin Caroline, our inspiration.

Juliette H.

"Bravo Rosine! Lets Find a Cure!"

Jeannine F.

"For Caroline"

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!"

Edward C.

" I support you, George!"

Davy A.


Monica L.

"This is for you George!!!"

Jason D.

"Praying for your full recovery George!"

Vedat Y.

"For Rosine's Son George"

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"

Suzanne S.

" For Caroline"

Benjamin V.

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

Richard P.

"Good luck"

Diana J.

"We Will Survive"

Scot M.

"Love you George"

Jessica P.

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

Aelicia B.

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

Rachael L.

"Prayers to all!"

Mary T.

"For Sweet Caroline!!!"

Edward S.

"In Support of Rosine's Son"


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