https://www.edsrf.org/donation#donate

Ehlers-Danlos Syndrome Research Foundation, Pikesville, MD (2026)

12/31/2023

Coming this winter is a new resource for the EDS Community, the EDSRF Medical MasterClass series! In these webinar sessions we will bring the EDS Experts to you! Each webinar will end with a live Q&A section.

As a sneak peek, we’ve posted a teaser reel from our first in the series, An Introduction to Accommodations: from Kindergarten to the Workplace! You can find this video clip on the Events page of our EDSRF website. Future webinars will be available through registration.

Head on over now to check it out, then remember to subscribe to our newsletter to make sure you receive announcements for upcoming webinars.

https://www.edsrf.org/events

In this video, you’ll join P.R.I.S.M. Spine & Joint physicians, Dr. Alissa Zingman, MD MPH and Dr. Sarah Cohen Solomon, MD as they discuss the difference between school and workplace regulations.

They will talk about which types of accommodations are most prevalent in their Ehlers-Danlos Syndrome patients.

We hope you enjoy this sneak peek!

Wishing you a Dazzling New Year!

12/31/2023

Best Wishes for a Dazzling New Year from the Ehlers-Danlos Syndrome Research Foundation!

As a young, nimble, and highly focused medical research organization, we’re undertaking and supporting studies to lay the groundwork quickly and efficiently for improved healthcare outcomes for the millions of people living with EDS and Hypermobility Spectrum Disorders (HSD). In 2023, we made a bold statement to honor our mission by awarding $310,000 in grants for new EDS research projects. Our goal in 2024 is to continue this momentum by funding critically needed connective tissue defects research. In 2024, we intend to fund even more innovate and creative minds ready to become the next generation of top EDS researchers.

One of our founders, Dr. Alissa Zingman, often says “EDS is not a rare disease; but it is rarely diagnosed.”

On this last day of 2023, please consider dazzling us with an end-of-year donation! EDS research is underfunded. Your support will help make a difference. Finish the year strong and fund critically needed EDS research! Your donation today will push us towards our end-of-year goal!

Click link to donate today!

https://www.edsrf.org/donation

We still have funds available for our $75K anonymous match, please help us reach our goal.

Together we can ALL make a difference for EDS!

Thank you to everyone who has already donated.

#2024

12/31/2023

As 2023 draws to a close, dazzle us with an end-of-year donation! EDS research is underfunded. Your support will help make a difference. Finish the year strong and fund critically needed EDS research! Your donation today will push us towards our end-of-year goal!

Click link to donate: https://www.edsrf.org/donation

We still have funds available for our $75K anonymous match, please help us reach our goal.

In 2024, we intend to fund even more innovate and creative minds ready to become the next generation of top EDS researchers.

Together we can ALL make a difference for EDS!

Thank you to everyone who has already donated.

Best Wishes for a Dazzling New Year!

12/25/2023

Warmest wishes for a Dazzling Holiday Season from the Ehlers-Danlos Syndrome Research Foundation! As we embrace the holiday season, we ask you to pause to acknowledge the added challenges people with Ehlers-Danlos Syndrome (EDS) may encounter during this time. Amidst the cheerful festivities, many of us with EDS may experience increased discomfort, serving as a reminder of the daily realities shaped by our connective tissue differences.

Throughout the year, your unwavering support has fueled our efforts toward EDS research. In the spirit of reflection, we are excited to share the remarkable progress we've made together in 2023. As we look back on this year's accomplishments, we're immensely grateful for your continued dedication and partnership in advancing our mission.

Let’s take a moment to celebrate the significant milestones we've achieved and anticipate the promise and potential of the coming year.

Please consider an End-of-Year contribution to help support EDS Research. We have a $75K Match from an anonymous donor, help us meet our goal this year! Click the link for our website to contribute today: https://www.edsrf.org/donation

Thank you for being a part of our dazzling community!

12/10/2023

We are excited to share the remarkable progress we've made together in 2023. As we look back on this year's accomplishments, we're immensely grateful for your continued dedication and partnership in advancing our mission.

Please consider an end-of-year donation to help support EDS research!

For more details on all of our research please visit our website: www.edsrf.org/research

We committed over $300K in funding for new EDS research in 2023!

Grant Award 1
Risk of Severe Disease and Post-Acute SARS-CoV-2 within Connective Tissue Diseases
Kennedy Krieger and Johns Hopkins Medical Institute

Grant Award 2
Toward Artificially Intelligent Wearable Neuromodulation Systems to Address Postural Orthostatic Intolerance and Other Autonomic Disturbances in Humans with Hypermobile-type Ehlers-Danlos Syndrome
Purdue University and Indiana University School of Medicine

Grant Award 3
Risk Factors for Long Covid
Brighton & Sussex Medical School

Other EDSRF Research Projects Underway

Economic Impact of Ehlers-Danlos Syndrome: Patient Perspective
Comprehensive study of the costs associated with EDS in the US to determine the total impact on patients and the economy, results are being analyzed

The Impact of Underinvestment in Hypermobile Ehlers-Danlos Syndrome (hEDS)
hEDS is under-recognized, and the variety of skeletal and organic manifestations under-appreciated. The survey will be distributed to EDS patients at P.R.I.S.M. Spine and Joint and other EDS clinics site in 2024

Prevalence of Ehlers-Danlos Syndromes in the United States
The EDS community lacks a comprehensive, large-scale analysis on the prevalence of EDS. The Foundation has committed resources to take on this necessary task

Research Completed in 2023

Analysis of Micronutrient Tests for Nutritional Deficiencies in Patients with Ehlers-Danlos Syndrome
Goal is to identify specific nutritional deficiencies in people with EDS as a starting point for potential therapeutic targeting. Presented at the American College of Medical Genetics

Changes in Pain and Other Symptoms of Ehlers-Danlos Syndromes Over Time
Qualitative study, third study in a series, of research of an EDS patient cohort. Manuscript will publish in 2024

11/30/2023

Wow! This GivingTuesday, our EDS community really came together to support EDS research.

We are so grateful.

Our sincerest thanks to all of you! This was our second time participating in GivingTuesday, and the official start to our annual Giving Season. We were pleased to see both new and returning donors.

Your support matters!

Many in our EDS community helped support our mission through generous financial donations, many others supported us by working to amplify our message and by sharing personal stories.

We are motivated to make change!

One of our founders, Dr. Alissa Zingman, often says “EDS is not a rare disease; but it is rarely diagnosed.” The Ehlers-Danlos Syndrome Research Foundation is a young, nimble, and highly focused medical research organization, poised to undertake and support studies to quickly and efficiently lay the groundwork for improved healthcare outcomes for the millions of people living with EDS and Hypermobility Spectrum Disorders (HSD).

Thank you!

Here's how you can help keep the momentum going this Giving Season:

Spread the Word: Share this post and encourage fellow members and allies of our EDS community to support EDSRF’s commitment of raising $500,000 in research funding this Giving Season.

Together we can ALL make a difference for EDS!

11/28/2023

Give Today to Make a Difference in EDS Research

It’s GivingTuesday and a great day to donate and show your support for Ehlers-Danlos Syndrome (EDS)and Hypermobility Spectrum Disorders (HSD)!

The Ehlers-Danlos Syndrome Research Foundation (EDSRF) is a young, nimble, and highly focused medical research organization, poised to undertake and support studies to quickly and efficiently lay the groundwork for improved healthcare outcomes for the millions of people living with EDS and HSD. The majority of our donations are immediately invested into EDS and HSD research projects. In 2023 the EDSRF funded over $300K in EDS research grants.

Why should you donate? Because EDS is underfunded!

There is an urgent need for EDS medical research and the education of healthcare professionals. Connective tissue exists throughout the human body, impacting every single medical specialty – and yet, most medical school curriculums spend less than one day focused on the disease. From EDSRF’s founding in 2020, we have been driven by an enormous and largely unmet need to fund medical research that makes a difference – quickly, consistently, and effectively.

Double Your Donation!

We have a $75K match from an anonymous donor! Donate today and you'll be one of our first to have your gift doubled before our $75K match runs out!

Help Us Meet Our Goal!
Please consider donating today to help us meet our goal of 100 donors on GivingTuesday by supporting Ehlers-Danlos Syndrome research. Read more about our current research projects on our website: edsrf.org.

The annual giving season is when the EDSRF receives our largest volume of donations for the year. Truly, every contribution matters, regardless of size, every donation, large and small, helps us fund our EDS research.

Here is how you can support GivingTuesday today:

Spread the Word: Forward this email and encourage fellow members and allies of our EDS community to support EDSRF’s commitment of raising $500,000 in research funding this Giving Season.

Share Your Story: Why do you give to the Ehlers-Danlos Syndrome Research Foundation to help support medical research? What impact has EDS had on you and your family? Please comment or email us at [email protected] if you’d like to share!

Donate: Donate today to help fund EDS research.

Thank you for your support!

Together we can ALL make a difference for EDS!

11/28/2023

Calling ALL Early Birds: GivingTuesday is Tomorrow!

GivingTuesday is tomorrow, November 28, and we'd like to make this fun and easy!

First, if you donate today, you can skip reading our reminders tomorrow.

Second, we're announcing a $75K match from an anonymous donor! Donate today and you'll be one of our first to have your gift doubled before our $75K match runs out!

We are thrilled that donations have already started coming in! Help us meet our goal of 100 donors on GivingTuesday by supporting Ehlers-Danlos Syndrome research. Please consider donating today to help us reach our GivingTuesday goal.

The annual giving season is when the EDSRF receives our largest volume of donations for the year. Truly, every contribution matters, regardless of size, every donation, large and small, helps us fund our EDS research.
Here is how you can support GivingTuesday today:

Spread the Word: Forward this email and encourage fellow members and allies of our EDS community to support EDSRF’s commitment of raising $500,000 in research funding this Giving Season.

Share Your Story: Why do you give to the Ehlers-Danlos Syndrome Research Foundation to help support medical research? What impact has EDS had on you and your family?

Donate: you don’t have to wait until November 28, you can donate now to help fund research.

Thank you for your support!

Together we can ALL make a difference for EDS!

11/23/2023

We are so thankful for you! In this season of giving and reflection, we are filled with immense gratitude for your support of the Ehlers-Danlos Syndrome Research Foundation. When you give to our Foundation, you help us to fund research necessary to improve the health and well-being of people living with Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder (HSD).

We are deeply thankful for your commitment as we strive to advance innovative research on treatment modalities, efficacy, and delivery, and to educate healthcare providers across disciplines on the diagnosis and management of this patient population.

Our ability to provide the hope and healing for the EDS community deserves depends on you.

Together we can ALL make a difference for EDS!

Happy Thanksgiving to you and your loved ones.

11/22/2023

GivingTuesday is one week away, on November 28, 2023. GivingTuesday is a global generosity movement unleashing the power of radical generosity. GivingTuesday was created in 2012 as a simple idea: a day that encourages people to do good, inspires hundreds of millions of people to give, collaborate, and celebrate generosity.

This year, our Foundation has set a goal of 100 donors on GivingTuesday to kick off the annual giving season and help support Ehlers-Danlos Syndrome research. We are proud to announce that donations have already started coming in! Please help us reach our GivingTuesday goal by November 28.

The annual giving season is when the EDSRF receives our largest volume of donations for the year.

Truly every contribution matters, regardless of size, every donation, large and small, helps us fund our EDS research.

Here is how you can support GivingTuesday today:

Spread the Word: Forward this email and encourage fellow members and allies of our EDS community to support EDSRF’s commitment of raising $500,000 in research funding this Giving Season.

Share Your Story: Why do you give to the Ehlers-Danlos Syndrome Research Foundation to help support medical research? What impact has EDS had on you and your family? Please email us at: support @ edsrf.org if you’d like to share!

Donate: you don’t have to wait until November 28, you can donate now to help fund research.

Thank you for your support!

Together we can ALL make a difference for EDS!

10/31/2023

We’ve just earned our 2023 Platinum Seal with ! We are excited to share the work our nonprofit does through our . Learn how you can support us and make a difference.

https://www.guidestar.org/profile/shared/44e39a77-f674-470d-9501-91ea7a6b9c9a

10/17/2023

Last call to participate! Survey closes on October 31, 2023.

Penn State College of Medicine is seeking U.S. participants with Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorders (HSD) for a research survey.

This study is to better understand the economic impact of EDS and HSD. The questionnaire should take approximately 30-minutes to complete and allows you to save your work and complete it in multiple sessions. It is recommended that you gather your 2022 medical expenses before you begin.

The economic impact of managing EDS and HSD is both underappreciated and significant. Patients frequently bear enormous out of pocket costs for medical appointments, mobility aids and physical therapy not covered by insurance plans. Special diets and supplements recommended for many with EDS are prohibitively expensive.

This study was approved by the Penn State College of Medicine’s Institutional Review Board (IRB) and funded in part by the Ehlers-Danlos Syndrome Research Foundation.

Link to the survey: https://redcap.ctsi.psu.edu/surveys/?s=8DNJEWFWP44R7XJL

Ehlers-Danlos Syndrome Research Foundation

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