u/ihopeurwholelifesux

Sorry this is going up a bit late - I had almost everything put together for this to be posted last week, but Reddit didn’t save the draft.

May 12

- Coping with Grief and Loss: This group discussion is dedicated to the challenges our community faces when we lose our beloved friends, community members, and family members to VEDS, Marfan, or Loeys-Dietz syndrome. It is a safe place for us to discuss our emotions, honor the memory and joy of our loved ones, and move forward together. This group is also open to anyone coping with loss in the community. Register

May 13

- VEDS Parent Support Group for Adult Children: If you are a parent of an adult (18 years and older) with VEDS, we invite you to join other parents to discuss your experiences. Register

May 16

- NYC/Tristate Symposium: Living Better with Marfan, Loeys-Dietz, VEDS, & Stickler: This informative and engaging event will provide the latest updates on treatment, medical management, and quality-of-life issues, and includes opportunities to network with the medical experts and connect with others in the area who are also living with these conditions. $25 registration fee, includes breakfast and lunch. Register

If you are unable to afford the fee, there is information on the page for assistance.

- REDS4VEDS Day: Wear Red, Take a Photo, Share it on your socials: #REDS4VEDS. Social media toolkit, merchandise.

May 18

- Teen Talk: The Marfan Foundation is hosting a virtual group for Teens ages 13-18 with Marfan syndrome, VEDS, Loeys-Dietz syndrome, and related genetic aortic and vascular conditions to increase opportunities for social interaction with others with a similar diagnosis. The Teen Talk will include open conversations and connections on various appropriate topics and will be led by our staff member, Dominga Noe, and our volunteer leader, Peter Donato. This group is not designed to offer therapy or counseling but rather an opportunity to speak on the highs and lows of living with chronic conditions and be more connected with others in the same age group. Register

May 20

- Support for Parents/Guardians of Children w/Marfan, LDS, related conditions: Are you are a parent or guardian of a child with Marfan syndrome, Loeys-Dietz syndrome or a related connective tissue condition? Is your child 18 years old and younger? If so, we invite you to join other parents to discuss the challenges of raising a child with one of these conditions. Register

- Conexiones: Estamos juntos (impartido en español): Grupo de apoyo virtual para establecer conexiones con otras personas que tienen condiciones del tejido conectivo. (impartido en español). Registrarse

May 26

- VEDS Partners and Spouses: This group is for partners, spouses, and significant others of individuals diagnosed with VEDS to talk about their experience with others with similar experiences. Register

- Support for Young Adults with Marfan, VEDS, LDS and related conditions: Have you been diagnosed with Marfan syndrome, VEDS, Loeys-Dietz syndrome or another related condition? Are you between the ages of 18 and 30?  Would you like to connect with others in your age group? If so, this support group is for you. Register

May 27

- VEDS Parents (Under 18): If you are a parent or guardian of a child with VEDS, we invite you to join other parents to discuss the challenges of raising a child with this condition. This group will be hosted by Ryan Rodarmer, director of The VEDS Movement. Register

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The Walk For Victory is ongoing - more information can be found on this page.

Registration is open for Camp Victory for Kids this summer: Don’t miss out on this opportunity for your child/children, ages 7-16, to attend Camp Victory for Kids. This five-night camp is designed for children with Marfan, VEDS, Loeys-Dietz, and related syndromes, as well as their siblings, to participate in a traditional overnight camp in a safe and accessible setting. Give your kid(s) the gift of friendship, independence, and memories to last a lifetime. Scholarships are available to cover the registration fee, which includes lodging, meals, activities, and travel.

- Georgia: Register Scholarship applications for this camp were due May 8.

- California: Register Scholarship applications for this camp are due June 2.

and Camp Victory for Families in the fall: Join us for this exciting opportunity to meet other families impacted by Marfan, VEDS, Loeys-Dietz, and related syndromes. Enjoy your time with your entire family, participating in traditional camp activities in a safe and accessible environment.

- Georgia: Register Scholarship applications for this camp are due July 31.

- California: Register Scholarship applications for this camp are due August 28.

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Registration is also open for 2 symposiums later this year:

- Barcelona - 3 de octubre: Simposio Internacional en Barcelona: Claves para una vida plena con Marfan, Loeys-Dietz, VEDS y Stickler. Este programa celebrará íntegramente en español. Las presentaciones, impartidas por expertos médicos de España y otros países, estarán dirigidas a personas y familias que conviven con estas condiciones. Los asistentes tendrán la oportunidad de hacer preguntas a los especialistas, así como de establecer contacto tanto con ellos como con otras personas que comparten una experiencia médica similar. Se ofrecerá desayuno y también contaremos con una comida especial titulada Creando Conexiones. 
Las presentaciones generales abordaran los síndromes de Marfan, Loeys-Dietz, VEDS y Stickler. Además, habrá sesiones paralelas enfocadas específicamente en cada una de estas condiciones. La inscripción es gratuita, pero obligatoria. SIMA dispondrá de un espacio independiente con actividades para niños de 5 a 12 años. Registrarse

- London - Oct 10: Please join us for our Second International Symposium/London: Living Better with Marfan, Loeys-Dietz, VEDS and Stickler. The presentations, which will feature medical experts from the UK and from around the world, will be geared to individuals and families living with these conditions. Attendees have the opportunity to ask questions of the experts. They will also be able to network with the experts and with other people who are on the same medical journey. Breakfast will be available, and we will also have a Creating Connections lunch. General presentations will be applicable to Marfan, LDS, VEDS, and Stickler, while we will also offer breakout sessions that focus on each of the conditions. Registration is free but required.
The Brompton Fountain is offering onsite activities during the symposium hours for children ages 5-12. Register
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If you are a healthcare professional or scientist, registration is open for an event in September focusing on the genetically defined EDSs: The Ehlers-Danlos Society is delighted to be hosting the Precision Medicine for Genetically Defined Ehlers-Danlos Syndromes event, taking place on September 3-4, 2026, in Ghent, Belgium. This is a hybrid event that can be viewed from anywhere in the world, in over 60+ languages. This event is for healthcare professionals, researchers, scientists, patient representatives, and policy-makers alongside representatives from pharmaceutical, biotechnology, diagnostics, digital health, and related healthcare organisations. Tickets are a bit pricy. The call for abstracts from researchers and clinicians is still open as well, until June. Register
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Recent News and Publications:

- The VASCERN Medium Sized Arteries Working Group has released a consensus statement about the use of angiotensin II receptor blockers (ARBs), specifically irbesartan in combination with a beta blocker, in VEDS patients. PDF, More Information The page also notes that they are “currently working on the production of consensus statement documents on various topics such as in vitro fertilization (IVF) and pre-implantation genetic diagnosis (PGD) in vEDS.”

- A case series was recently published looking at pregnancy in 6 women with known vEDS. Read here

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Studies Recruiting VEDS Patients:

- The Collaborative For Longitudinal Aortic Imaging In The Young (CLARITY) is still enrolling patients. This study is looking at long-term aortic changes to develop better guidelines for children and young adults with genetic aortic conditions. It seems like this one is only working with patients from the US & Canada, but I wasn’t able to find confirmation of that being a requirement. Information and enrollment

- Metabolic phenotyping in individuals with vascular Ehlers-Danlos Syndrome. The University of Cambridge is looking for 15 adults with a confirmed genetic diagnosis (proof of pathogenic variant required, VUS not eligible) to complete some testing at Addenbrooke’s Hospital that will look at whether there are differences in their fat tissue when compared to healthy subjects. They are most interested in those with glycine substitutions, but all pathogenic variant types are eligible. More information and contact form

- Co-Producing and Piloting an Exercise-Based Lifestyle Intervention for Individuals with Vascular Ehlers-Danlos Syndrome. Researchers at Sheffield Hallam University are now inviting adults with vEDS, their family members, and healthcare professionals to take part in the research study exploring experiences of physical activity, lifestyle, and wellbeing. The study involves interviews, optional online group discussions, and (for some participants) an optional 12-week online lifestyle programme. You can choose which parts, if any, you would like to take part in. This one has been funded by Annabelle’s Challenge and The Ehlers-Danlos Support UK. More information and contacts

- The ORCCA Study is still enrolling athletes with a confirmed diagnosis. This study is looking at outcomes for individuals in competitive sports with cardiac diagnoses, and VEDS is one of the eligible conditions. More information and enrollment

- The celiprolol trial in the US seems to be recruiting. I thought I read that it was not going to be moving forward? As far as I can tell, it is happening. Participation in this study requires you to stop taking any beta blockers you are currently on, though you are able to continue other blood pressure medications. 50 patients will receive placebo and 100 will receive celiprolol. More information and enrollment

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If you are reading this and formatting is awful, pls come back in an hour or so - I’m posting from mobile and it tends to mess things up that I have to go back in and edit

My friend who I moderated a few subreddits with passed away almost 2 years ago and we have kept her on the mod lists. I want to keep her there because she passed from the diseases that our subreddits are support groups for, and I want her to be remembered for her work running them. Her profile is also public and the history on it may be helpful for new users with her diagnoses, so that’s another reason.

I understand that as time passes this can sometimes become a security issue. Is there a way we can set her account up with Alumni status without it needing to be requested on her end? Or is there another alternative that would work better?

Thank you.

Edit: This has been resolved, we can request Alumni role for other mods without them having to accept it on their account - I’ll leave the post up in case anyone has the same question in the future!

Edit 2: This post is continuing to get upvotes and next Friday is the awareness day for her disorder. If anyone is reading this with curiosity, please consider wearing RED or dressing your subreddit up in RED 4 VEDS on May 15 ❤️ increased awareness means earlier diagnoses and earlier diagnoses can save lives. https://thevedsmovement.org/veds/what-is-veds/ https://www.reds4veds.org/ r/VEDS