EDSers United

EDSers United The EDSers United Foundation is a public charity dedicated to establishing the Treatment and Research Center for Rare Genetic Conditions.
EDSers United is dedicated to developing the Treatment and Research Center for Rare Genetic Conditions within the state of NJ. This state of the art facility will conduct groundbreaking research and provide clinical services to rare disease patients seeking proper diagnosis, treatment and managed care.
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EDSers United was founded in December of 2010, a few months after the founder, Nadia Bodkin, received a diagnosis of EDS. After receiving her diagnosis, she found that the EDS community was suffering from neglect, misinformation, and a severe deficiency in community support programs and resources. This encouraged the incorporation of EDSers United as a nonprofit public charity. Since our incorporation, the EDS community has advanced significantly in the realm of global awareness efforts, community support groups and social networks, regular webinars, and active advocacy leaders. There are currently over 22 nonprofit organizations with mission statements dedicated to advancing those affected by Ehlers-Danlos Syndrome in some form, most of which are focused on awareness and patient advocacy work. Our purpose is to meet the unmet needs of our community. Based on the services currently being provided to our rare community by disease specific and non-disease specific organizations, our team at EDSers United has decided to develop the Treatment and Research Center for Rare Genetic Conditions. Our purpose is to focus on advancing research, improve diagnostic tools, and to establish treatment and management options for underserved rare genetic conditions. Our entire team is committed to our mission. We need the support of the community in order to show our sponsors that the rare disease community does in fact demand the development of the Treatment and Research Center for Rare Genetic Conditions. By joining our voices, we create a powerful force for rare disease recognition, research development, and the establishment of a future filled with hope, positive beliefs, cures and treatment options. Join our cause today.

Mission: At EDSers United, our mission is to establish the Treatment and Research Center for Rare Genetic Conditions. This center of excellence will specialize in diagnosing, treating and managing patients with rare genetic conditions, as well as researching these types of conditions. This state of the art facility will consist of research laboratories and a medical clinic where patients will have an opportunity to not only receive medical treatment and management tailored specifically to address their specific rare genetic condition, but to contribute to the advancement of rare disease research.

!!!!COVID-19 UPDATE!!!! Regarding the March 22nd In-Person Meeting:We have made this decision out of an abundance of cau...
03/10/2020
NJ Community Support Program

!!!!COVID-19 UPDATE!!!! Regarding the March 22nd In-Person Meeting:

We have made this decision out of an abundance of caution regarding COVID-19, and to prioritize the health and safety of our meeting attendees by CANCELING the IN-PERSON Community Support Group Meeting this March 22, 2020 and instead HOSTING a VIRTUAL Meeting. Below are the details for the Virtual Video Meeting via Zoom.

Visit the following link to learn more:
https://www.edsers.com/nj-community-support-program.html

NJ EDS Support Group Meeting Information

If you haven't completed the Adults Living Rare Survey yet, there is still time! The survey closes March 31st. If enough...
03/09/2020

If you haven't completed the Adults Living Rare Survey yet, there is still time! The survey closes March 31st. If enough EDSers take the survey, we will have data on the effects of EDS on adults which can be used to inform assistance programs for people with EDS in the future. Please participate and make sure our voices are heard!

Go to https://www.rareadvocacymovement.com/adultslivingrare to take the survey and please share and encourage your friends and family to take the survey as well.

#rareAdvocacy #rareLeaders #PatientAdvocacy #theother50percent #AdultsLivingRare

#EDSers #EhlersDanlosSyndrome #chronicpain #chronicillness #fibromyalgia #disability #rarediseases

01/04/2020
Blaze Therapeutics

To all EDSers who are taking CBD... check out this public safety alert.

#EDSers #EhlersDanlosSyndrome

PUBLIC SAFETY ALERT!

Not one CBD product recall has been issued regardless of hundreds of CBD products failing third party testing.

Why?

Because the CBD industry isn't regulated with enforceable laws, like most food product industries. Recalls are made at the sole discretion of the brand owners and manufacturers, and only 1 company is practicing Responsible Distribution within the CBD industry.

Educate Yourself and Choose to Be Responsible.

#CBD #HEMP #CBDoil #PublicHealth #Medicine #AlternativeMedicine #BlazeTherapy #BlazeEducation #chronicillness #chronicpain #fibromyalgia #patientadvocacy #labtested #epilepsy #fatigue #BeResponsible

PUBLIC SAFETY ALERT!

Not one CBD product recall has been issued regardless of hundreds of CBD products failing third party testing.

Why?

Because the CBD industry isn't regulated with enforceable laws, like most food product industries. Recalls are made at the sole discretion of the brand owners and manufacturers, and only 1 company is practicing Responsible Distribution within the CBD industry.

Educate Yourself and Choose to Be Responsible.

#CBD #HEMP #CBDoil #PublicHealth #Medicine #AlternativeMedicine #BlazeTherapy #BlazeEducation #chronicillness #chronicpain #fibromyalgia #patientadvocacy #labtested #epilepsy #fatigue #BeResponsible

The Rare Advocacy Movement and TPS have partnered to launch a survey aimed at learning more about the impact of rare con...
08/09/2019

The Rare Advocacy Movement and TPS have partnered to launch a survey aimed at learning more about the impact of rare conditions on adults.There are several adults in the EDS and Marfan community. If you are an Adult Living Rare, be sure to share your experiences. This survey will help to collect the data needed for institutions and organizations to build programs aimed at assisting adults with rare conditions like EDS, Marfans, etc.

#theother50percent

www.rareadvocacymovement.com/adultslivingrare

We partnered with The Planning Shop on a survey which will shed light on the impact of #rarediseases from symptoms to relationships to the ability to participate in hobbies.
Adults (18+) living with rare disease in the US are encouraged to participate! Responses will be anonymous. https://www.rareadvocacymovement.com/adultslivingrare

Ovid Therapeutics is partnering with Marinus Pharmaceuticals and the Liberty Science Center in Jersey City, NJ for a spe...
03/27/2019
Rare Disease Day 2019

Ovid Therapeutics is partnering with Marinus Pharmaceuticals and the Liberty Science Center in Jersey City, NJ for a special event celebrating rare disease patients and their families on Saturday, March 30th, from 11am to 3pm ET. You and your loved ones are invited to join rare disease advocates for lunch, fun activities for children of all ages and ability level, and access to the Center including the largest planetarium in the Western Hemisphere.

Registration is FREE and available at the following link: https://lsc.org/rarediseaseday.

The Liberty Science Center is ADA-compliant. Additional information on accessibility is available at https://lsc.org/visit/accessibility.

We look forward to seeing you there! #rareAdvocacy #EhlersDanlosSyndrome #rarediseases

The Rare Advocacy Movement (RAM) is hosting a whole genome sequencing giveaway. 5 people will be chosen at random to get...
03/01/2019
RAM | Genome Sequencing Giveaway

The Rare Advocacy Movement (RAM) is hosting a whole genome sequencing giveaway. 5 people will be chosen at random to get their genome sequenced by Nebula Genomics for free. In order to participate, you must agree to provide feedback to RAM at the conclusion for a report that will be generated. All participants identity will be kept anonymous. If you are interested in entering for a chance to win a free genome sequencing test, visit: https://www.rareadvocacymovement.com/genome-sequencing-giveaway

#EDS #chronicpain #EhlersDanlosSyndrome #genomesequencing #healthdata #pathtodiagnosis
#EDSersUnited

RAM is a patient advocacy initiative focused on documenting the complex structure and unique dynamics of the rare disease patient advocacy landscape.

05/06/2018
R.A.R.E. - Ill Featherz ft. Michelle Ta (Prod. JDAWA)

Rare is Everywhere! #EhlersDanlosSyndrome #EDSAwareness #rarediseases

R.A.R.E. (Rare Advocacy Recognized Everywhere) Ill Featherz ft. Michelle Ta (Prod. JDAWA) [Intro: Lily's Speech] 0:00-0:20 Hi, my name is Lily Kate Spletzer ...

01/28/2018

Just wanted to let everyone know to please email us at [email protected] if you would like to get in touch with a member of our team. For some reason, we can see that we are getting facebook messages but cannot retrieve them or see the contents of those messages. We hope Facebook fixes this glitch soon, but in the mean time, email us directly and someone from our team will respond as soon as possible. Stay Strong & Connected!

COLLEGE RESOURCES FOR STUDENTS WITH DISABILITIESSupport, Advocacy and Assistive Technology to Facilitate the Transition ...
12/04/2017
Resources for Students with Disabilities | AffordableCollegesOnline.org

COLLEGE RESOURCES FOR STUDENTS WITH DISABILITIES
Support, Advocacy and Assistive Technology to Facilitate the Transition to Higher Education

For students with disabilities entering college, finding the right resources to ease the transition can mean a more successful experience. Discover these resources, find tips and read about…

A Rational Guide to Fibromyalgia: The science of the mysterious disease of pain, exhaustion, and mental fog
10/28/2017
A Rational Guide to Fibromyalgia

A Rational Guide to Fibromyalgia: The science of the mysterious disease of pain, exhaustion, and mental fog

The science of the mysterious disease of pain, exhaustion, and mental fog.

The consequences of untreated pain https://buff.ly/2eUSesL #EhlersDanlosSyndrome #ChronicPain
09/10/2017
The Consequences of Untreated Pain

The consequences of untreated pain https://buff.ly/2eUSesL #EhlersDanlosSyndrome #ChronicPain

By Roger Chriss, Columnist Pain is an alarm signal requiring attention. Whether the pain lasts minutes or months, it demands a response. To ignore pain is to invite serious consequences, from burned…

Over half of all chronic pain patients also develop depression.Researchers know that short-term pain affects brain areas...
09/10/2017
Long-Term Neuropathic Pain Leads to Changes in Gene Expression in Brain Areas Associated With Depression

Over half of all chronic pain patients also develop depression.

Researchers know that short-term pain affects brain areas implicated in depression, but few studies have scrutinized the effects of long-term pain on gene expression in those regions or examined gene expression alterations in multiple brain regions at once.

Now, researchers use network analysis along with a mouse model of chronic pain and a mouse model of stress-induced depression to identify changes in gene expression throughout the brain that may underlie the connection between pain and depression.

https://buff.ly/2wRdW5u #Neuropathy #ChronicPain #Depression

Over half of all chronic pain patients also develop depression. Researchers know that short-term pain affects brain areas implicated in depression, but few studies have scrutinized the effects of…

Approximately 50,000 people a year die with opioids of one kind or another in their systems. The number you don't hear i...
09/06/2017
I-Team: The Opioid Conundrum

Approximately 50,000 people a year die with opioids of one kind or another in their systems. The number you don't hear is this one -- there are as many as 25 million Americans who suffer with chronic pain. For many of them, opioid medication means the difference between leading somewhat normal lives, or surviving in constant agony. https://buff.ly/2w0kRXQ #chronicpain #opioidepidemic

Nightly newscasts across the country are filled with stories about the opioid epidemic -- the opioid crisis. Tens of thousands of Americans who die each year are found with opioids in their systems,…

9 things only someone in #chronicpain understands  #raredisease #invisiblecondition #EhlersDanlosSyndrome
09/05/2017
9 Things Only Someone With Chronic Pain Understands

9 things only someone in #chronicpain understands #raredisease #invisiblecondition #EhlersDanlosSyndrome

As many as a third of Americans suffer from chronic pain—a full third! If you're one of those people for whom low back pain, headaches, arthritis, or one of a long list of other conditions makes…

Global Genes is hosting a public workshop with the FDA on how to effectively communicate with the FDA.  This event is fr...
09/05/2017
FDA Workshop – How to Effectively Communicate with the FDA

Global Genes is hosting a public workshop with the FDA on how to effectively communicate with the FDA. This event is free of charge and is focused on rare disease drug development.

When: October 30, 2017 - Time: 8:00 AM to 4:00 PM - Where: FDA White Oak Campus in Maryland

To register and for more info visit: https://buff.ly/2iVwgqO #raredisease #FDA #buildingbridges

Global Genes is proud to partner a public workshop with the Food and Drug Administration (FDA) Center for Drug Evaluation and Research (CDER) on how to effectively communicate with the FDA. T…

Have you tried CBD yet? Unfortunately not all CBD products are made equal. CBD products vary in purity, concentration, a...
08/29/2017
Home - MaxifyLife

Have you tried CBD yet? Unfortunately not all CBD products are made equal. CBD products vary in purity, concentration, and ultimately therapeutic efficacy. MaxifyLife takes the guessing out of the equation. Each product sold at MaxifyLife.com has been tested and received a high approval rating by various members of the rare disease community in terms of efficacy. At checkout you will have the opportunity to choose to donate a portion of the proceeds from your purchase to one of the listed organizations dedicated to serving the rare disease community. Check out buff.ly/2voWyYn today and don't forget to scroll down on the homepage to subscribe to MaxifyLife News to receive coupons and CBD-related informational updates. #maxifyLife #LiveLifeToTheMax #EhlersDanlosSyndrome #StayStrong #StayConnected #EDSersUnited #chronicPain #Fibromyalgia #Painsomnia

MaxifyLife is dedicated to providing access to safe, high quality products that improve overall health & wellness; while simultaneously supporting the efforts of advocates and organizations dedicated…

08/25/2017
www.edsers.com

As most of you know, EDSers United hosts a meeting every 4th Sunday of each month (free and open to the public). This Sunday is our next meeting and the topic will be CBD and medical cannabis. If this topic interests you, you are encouraged to join us. For more info visit https://www.edsers.com/nj-community-support-program.html #NJMMP #CBD #Hemp #EhlersDanlosSyndrome #EDSersUnited #StayStrong #medicalmarijuana

Chronic Pain Patients Did Not Cause Opioid Epidemic http://buff.ly/2qIlFxV #chronicpain #opioidepidemic
06/01/2017
Chronic Pain Patients Did Not Cause Opioid Epidemic

Chronic Pain Patients Did Not Cause Opioid Epidemic http://buff.ly/2qIlFxV #chronicpain #opioidepidemic

By Roger Chriss, Columnist Contrary to common belief, chronic pain patients are not all opioid addicts and did not cause the opioid crisis. The vast majority of patients who are prescribed opioids rarely misuse or abuse them. Opioid addiction is real and should not be ignored or downplayed

05/14/2017

Happy Mother's Day! 💐

The EveryLife Foundation has joined with Global Genes to host RARE on the Road – Rare Disease Leadership Tour! The goal ...
05/05/2017
RARE on the Road 2017 | EveryLife Foundation for Rare Diseases

The EveryLife Foundation has joined with Global Genes to host RARE on the Road – Rare Disease Leadership Tour!

The goal of these FREE events is to help advocates learn, grow and become independent activists for their rare disease community, so that any patients and caregivers who attend are inspired to be more active within the rare community broadly.

The conferences will take place across the country between May and July:
Saturday, May 13, 2017: Atlanta, GA
Monday, June 5, 2017: Kansas City, MO
Saturday, July 15, 2017: Portland, OR

There are travel scholarships available!!! Message us or email us at [email protected] if you are interested in representing for Ehlers Danlos Syndrome at one of these events.

http://everylifefoundation.org/rare-road-2017/

Address

10 Schalks Crossing Rd, Ste 501-283
Plainsboro, NJ
08536

General information

Ehlers-Danlos Syndrome (EDS) is classified as a group of rare connective tissue disorders. Unfortunately, there are no treatments or cures currently established for any of the EDS types. EDS isn't the only rare condition without a cure, however. There are 7000 different types of rare diseases and disorders and 80% of rare diseases are genetic in origin. EDSers United is dedicated to addressing the need for research and treatments for rare conditions like EDS with the development of the Treatment and Research Center for Rare Genetic Conditions.

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Comments

I would like to share with you my new book.
My daughter has just been diagnosed with EDS Hypermobility type. We live in Northwest Arkansas. I have learned there is a Closed Oklahoma Facebook group that can point us to some resources in our area. I cannot seem to find it. Can anyone help?