Matthew Rau Vascular Ehlers-Danlos Foundation

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Matthew Rau Vascular Ehlers-Danlos Foundation Our mission is to save lives & improve the quality of life of those living with VEDS.

03/05/2026

Built on loss. Driven by love. Fighting for every vEDS life 🤍

15/09/2024

Please join us at FIELD #1 (north entrance) at Rockland Lake for a 5k memorial walk to remember Matthew & support raising awareness of Vascular Ehlers-Danlos Syndrome. Follow signs to the parking lot, we will be setup by the pool.

08/03/2024

My name is Dan Sperry. I live in northern New Jersey. I have a beautiful wife named Melissa and an awesome son named DJ. In September of 2019, I brought myself to the hospital with intense pain in the middle of my abdomen, which I assumed was food poisoning.  It turned out that I had a saccular Abd...

27/02/2024

⚕️Looking for a doctor or therapist who understands Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD)? We know the struggle to find the right specialists. That's why we've created a directory where 1,523 health professionals worldwide have listed themselves as EDS and HSD-friendly care providers.

Just click the link here to search by your country and state: https://www.ehlers-danlos.com/healthcare-professionals-directory/

Don't see your location listed? Encourage your healthcare providers or colleagues to join the directory.

You can join the directory if you're a healthcare professional experienced in treating EDS and HSD. Let's work together to improve access to management and care for everyone dealing with these conditions.

12/02/2024

Join our Board Chair Bert Medina for a “fireside chat” about all things The Marfan Foundation at The Foundation Today. Register now for the 2/13 virtual event. Send in your advance questions by commenting below or emailing [email protected] Bert will chat with Foundation staff leaders about community-building, research, and more! Don’t miss it!

Sign up for 1 pm EST https://bit.ly/47DlRmG or 7 pm EST https://bit.ly/48ukU1q

09/02/2024

My story with Vascular Ehlers-Danlos Syndrome (VEDS) began in 2007, after a maxillary artery emergency and a thoracic aneurysm left me with more questions and no answers. For nine years, I sought out several medical consultations, spent countless hours doing my own research, and ultimately found a s...

06/02/2024

Want to meet others who have a genetically-confirmed VEDS diagnosis?

Join us tonight for VEDS Connect: https://bit.ly/3HW7nnc

05/02/2024

It is critical to be prepared for emergencies with VEDS. Download the Vascular Ehlers-Danlos Syndrome Emergency Preparedness Kit and Card here.

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