A wonderful tribute to the book by Dr. Daens and colleagues, “2022 — Transforming Ehlers-Danlos Syndrome, Stéphane Daens & Isabelle Dubois-Brock and colleagues.”

It is sufficiently well-recognized to have been included in the "Selected Resources" bibliography of the 2022 report by the National Academies of Sciences, Engineering, and Medicine in the United States. This is a fairly notable institutional reference.

(National Academies of Sciences, Engineering, and Medicine; Health and Medicine Division; Board on Health Care Services; Committee on Selected Heritable Disorders of Connective Tissue and Disability; Wedge RA, Cartaxo T, Spicer CM, et al., editors. *
* Washington, D.C.: National Academies Press (US); July 8, 2022.)

Let's keep up the fight and continue making progress in the field of SED!

https://www.ncbi.nlm.nih.gov/books/NBK584976/?utm_source=chatgpt.com

Many patients hear about the upcoming diagnostic criteria for hypermobile Ehlers-Danlos syndrome (hED) and wonder: Will I lose my diagnosis? Will I have to be re-evaluated? Will the criteria become stricter or broader?

At this point, it is important to remember one key thing:

! The new criteria have not yet been published.

The international initiative known as “Road to 2026” is currently underway and aims to update the entire classification of Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD/TSH). The official release of the new diagnostic framework is scheduled for December 1, 2026.  

Why change the 2017 criteria?

The current criteria have helped improve recognition of SEDh, but they have several limitations:

• difficulty in implementation by many doctors;
• significant variability in symptoms depending on age, sex, and medical history;
• significant overlap between SEDh and hypermobility spectrum disorders (HSD);
• insufficient consideration, at times, of the multisystemic manifestations observed in clinical practice.  

The stated goal is to improve:

• access to diagnosis;
• consistency across countries;
• the recognition of actual clinical patterns observed in patients;
• care pathways.  

What could he change?

At this point, no one outside the international working groups knows the exact content of the future criteria.

However, preliminary studies suggest several possibilities:

• a reassessment of the role of the Beighton score;
• a reflection on the sometimes artificial distinction between SEDh and TSH/HSD;
• greater consideration of the full clinical picture and systemic complications;
• a more practical diagnostic pathway for clinicians.  

However, these details remain speculative until the official announcement.

What does this mean for patients who have already been diagnosed?

The most frequently asked question is:

“Will I lose my diagnosis?”

The honest answer today is:

We don't know yet.

Nevertheless, in previous revisions of the classifications, experts have generally avoided systematically questioning diagnoses already established by experienced teams.

It is therefore unlikely that a large number of patients will suddenly have their diagnoses revoked overnight. Future recommendations will focus more on improving future diagnoses than on retroactively invalidating past ones. This issue will nevertheless need to be clarified in official publications.  

What patients can do right now

✔️ Keep important medical records.

✔️ Keep a record of your personal and family medical history.

✔️ Continue with the recommended follow-up care regardless of the diagnosis.

✔️ Don’t worry unnecessarily before the official release.

✔️ Be wary of rumors circulating on social media: no final version of the criteria is currently available.

An important message

The new criteria won't change your experience.

Pain, dislocations, fatigue, autonomic dysfunction, digestive problems, or other related symptoms will not disappear simply because a classification changes.

The stated goal of this revision is to better recognize patients and improve their access to care, not to deny their clinical reality.  

We will closely monitor the international reports scheduled for late 2026 and will notify you as soon as official data becomes available.

GERSED Belgium.

It is with deep sadness that we learned of the passing of Professor Rodney Grahame on March 29.

An internationally renowned rheumatologist, he was one of the pioneers in the recognition and understanding of hypermobility spectrum disorders and hypermobile Ehlers-Danlos syndrome. His work has profoundly transformed the way these conditions are perceived and managed, highlighting their systemic nature and functional impact.

A dedicated clinician, educator, and researcher, Professor Grahame has influenced generations of practitioners and played a pivotal role in bringing attention to patients who had long been overlooked.

He had also served as honorary president of GERSED Belgium since its founding, an organization he supported loyally.

We honor the memory of an exceptional physician, whose scientific and human legacy will continue to inspire our practice.

Our thoughts are with his family, his loved ones, and the entire community.

— GERSED Belgium

By Dr. Stéphane Daens, President of GERSED Belgium.

The term "fad disease" is still too often used to describe Ehlers-Danlos syndrome (EDS).

This statement is false, unscientific, and contributes to the trivialization and delay in treatment for thousands of patients.

It is important to set the record straight.

An ancient and well-identified genetic disease?

Ehlers-Danlos syndrome is a group of complex, hereditary genetic disorders of the connective tissue, first described in the late 19th century by doctors Alexander Chernogobov and then Edvard Ehlers. Hippocrates and Herodotus described a hypermobile people with exuberant scars 2,400 years ago in Eastern Europe, the Scythians (Ukraine).

A genetic disease cannot appear as a result of a fad.

Knowledge has evolved, but the disease existed long before it was recognized as it is today.

International diagnostic criteria?

In 2017, an international classification was published, based on a multidisciplinary consensus (geneticists, internists, rheumatologists, researchers).

These criteria now enable:

• Better patient identification
• A more consistent approach to diagnosis
• Recognition of long-ignored conditions, particularly hypermobile EDS

Why is SED being discussed more today?

The increase in the number of diagnoses does not mean that the disease is new.

It can be explained by:

• Better training for professionals
• Standardization of criteria
• Recognition of multisystem presentations
• The gradual end of widespread underdiagnosis

This phenomenon is well known in medicine and has already been linked to numerous conditions (autoimmune diseases, endometriosis, autism spectrum disorders, etc.).

—-> We're talking about diagnostic catch-up, not a passing trend!

A real multisystemic disease?

SED is not a list of vague or subjective symptoms.

This is a systemic disorder affecting connective tissue and even the neuroimmune system, which may involve:

• Joints, ligaments, tendons, muscles, etc.
• The skin, fascia, etc.
• The vascular system
• The autonomic nervous system
• The digestive, respiratory, urogenital systems, etc.
• Chronic pain and fatigue
• Activation of mast cells (MCDs)
• Proprioception
• The sensory organs (dys-sensory perception)
• Neuroatypicality and neurodivergence, ADHD, DYS-, ASD, HPI, and emotional HP.
• Small fiber neuropathy
• Etc.

These effects have a pathophysiological consistency that is documented in scientific literature.

Why is this expression problematic?

Describing SED as a "trendy disease":

• Don't deny the reality experienced by patients!
• Delays diagnosis and treatment!
• Maintain medical biases!
• Has no scientific value!

This expression most often translates as:

• A lack of training
• Discomfort when faced with complex illnesses
• A lack of knowledge about connective tissue diseases

What does science say?

✔ SED is a complex genetic disorder that is recognized.

✔ The diagnostic criteria are international and validated—and will likely be revised soon thanks to Road 2026 from the EDS Society (end of 2026).

✔ The increase in diagnoses reflects greater awareness.

✔ It is neither a trend nor a societal phenomenon.

The role of associations such as GERSED Belgium?

Associations such as GERSED Belgium play an essential role:

• Reliable information
• Awareness
• Dialogue with professionals
• Fighting misconceptions

To inform is already to treat.

In summary

– Ehlers-Danlos syndrome is not a fashionable disease.

– It is a complex genetic disorder, hereditary but not exclusively so, long-standing, and long underdiagnosed.

– The science is clear. It's time for medical discourse to be clear too.

Dr. Stéphane Daens and GERSED Belgium

Why request or extend physical therapy for "severe type E pathology" in Ehlers-Danlos syndrome (EDS)?

For some people with Ehlers-Danlos syndrome (EDS), physical therapy is an essential long-term treatment: it helps stabilize joints, reduce pain, improve endurance, limit injuries, and preserve independence.

When physical therapy is recognized as a "serious condition type E," patients are eligible for a greater number of sessions (350 per year) and these sessions are better reimbursed by mutual insurance companies, according to the reimbursement rules in Belgium.

✅ Why is a consultation necessary for an extension?

Even if you regularly visit your physical therapist, the extension of type E sessions must be based on recent medical advice.

This consultation serves to:

• Assess your current situation (pain, instability, fatigue, limitations, comorbidities associated with SED and their treatments, including medication, orthotics, or other treatments), adapt treatments, and request any additional tests, etc.

• Check progress since the last prescription (improvement, plateau, relapses).

• Adapt physical therapy objectives (stabilization, proprioception, strengthening, progressive rehabilitation, etc.).

• Ensure that prescriptions are complete and comply with mutual insurance company requirements.

• Provide medical justification for continuing treatment in the event of an inspection.

👉 In other words: the consultation allows you to clearly document why physical therapy is still necessary, and what it aims to improve or maintain.

✅ An important point: this is not "administrative":

This approach is not intended to "complicate matters."

Health insurance companies may request further details, especially if the sessions are prolonged. A well-constructed medical file increases the chances of:

• Continue care without interruption.

• avoid rejection or requests for additional justification.

• Maintain continuity of care appropriate for SED.

✅ In summary

Consultation ensures that physical therapy for severe conditions such as E remains:

• medically justified,

• tailored to your situation,

• and complies with the reimbursement rules,

in the context of Ehlers-Danlos syndrome.

📌 If you need an extension, remember to make an appointment before the end of your sessions to avoid any interruption. 

Requests by mail will therefore no longer be completed and returned without consultation. 

• Please also print out and bring the serious illness application form (available on Dr. Daens' website, for example) to your rheumatologist. 

Dr. Stéphane Daens 

Internal Medicine – Rheumatology 

Ehlers-Danlos Syndrome (EDS): a cross-cutting health issue

Ehlers-Danlos Syndrome (EDS) is a heterogeneous condition that is often underdiagnosed, combining chronic pain, hypermobility, instability, fatigue, functional disorders, and multisystemic involvement.

👉 General practitioners and specialists (physical medicine and rehabilitation, rheumatology, genetics, neurology, cardiology, internal medicine, etc.) play a key role in:

• diagnostic guidance

• coordination of the care pathway

• medical recognition of SED

• the link between specialized care, paramedical care, and patients

GERSed Belgium asbl works to strengthen this clinical and interdisciplinary dynamic around EDS in Belgium.

🎯 Missions of GERSed Belgium

• Dissemination of reliable and up-to-date medical information

• Support for special education (SED)

• Networking of sensitized physicians

• Structured interface between patients and healthcare professionals

• Contribution to greater clarity in the SED care pathway

🤝 Why become a physician member?

As a member professional, you benefit from:

✔️ an interactive mailing reserved for members

✔️ Targeted professional communications and content

✔️ access to specific SED teaching

✔️ Active participation in a committed medical network

✔️ and you support the operation and independence of the association

💶 Professional membership fee: €40/year

👉 General practitioners and specialists: join GERSed Belgium asbl and contribute to improving the structure of EDS care in Belgium.

📩 Membership terms and conditions: contact us via private message.

Website:

Www.gersedbelgium.com

Email from the secretary:

Contact@gersedbelgique.com

GERSed Belgium asbl is a Belgian association dedicated to Ehlers-Danlos Syndrome (EDS), a complex condition affecting joint stability, proprioception, posture, chronic pain, and fatigue.

🎯 Why does SED directly affect you?

SED patients frequently present with:

Joint instability and repeated microtrauma Proprioceptive and postural disorders Chronic diffuse and recurrent pain Complex musculoskeletal dysfunctions Fatigue and functional deconditioning

Physical therapists, osteopaths, and posturologists therefore play a central and decisive role in functional assessment, support, and the adaptation of long-term follow-up care.

🔬 Missions of GERSed Belgium

Dissemination of clinical content specific to SED Support for targeted teaching (proprioception, stabilization, posture, pain) Networking of professionals aware of SED Interdisciplinary exchanges on best practices Interface between patients and functional healthcare professionals

🤝 Why become a member?

As a member professional, you benefit from:

✔️ An interactive mailing reserved for members

✔️ Featured professional publications and posts

✔️ Access to specific SED teaching materials and resources

✔️ Integration into a committed clinical network

✔️ Active support for the association's operations and projects

💶 Professional membership fee: €40/year

👉 Join GERSed Belgium asbl and help improve the functional and postural care of SED patients in Belgium.

📩 Interested? Contact us via private message for membership details.

The mission of GERSED Belgium asbl is to support patients with Ehlers-Danlos syndrome (EDS), to inform, educate, and build strong bridges between patients, their families, and healthcare professionals.

👉 Our role
• Defend the interests of EDS patients
• Improve recognition and understanding of EDS
• Disseminate reliable, up-to-date, and accessible information
• Promote exchanges between patients and professionals
• Develop specific training and education projects

🎯 Our ambitions
• Strengthen the SED network in Belgium
• Develop targeted educational and scientific initiatives
• Raise awareness of the realities of SED
• Provide practical support to patients throughout their journey

🤝 Why become a member of GERSED Belgium?

By becoming a member, you:
✔️ Directly support the association's operations and independence
✔️ Access an interactive mailing list reserved for members
✔️ Benefit from exclusive publications and information
✔️ Have access to specific teachings and content
✔️ Actively participate in the life and projects of the association

💶 Annual membership fee
• €25/year for patients
• €40/year for professionals

Every membership counts. Every bit of support strengthens our ability to take action.
👉 Patients, professionals, loved ones: join us and become part of the GERSED Belgium network!

📩 To become a member or for more information, contact us via private message or through our usual channels.

Website: Www.gersedbelgique.com

Email: Contact@gersedbelgique.com

🙏 Thank you for your support and commitment to our cause.

Dear members,

Dear patients,

Dear healthcare professionals,

As we begin this new year, GERSED Belgium would like to extend its sincerest wishes for health, serenity, and hope. May the coming year 2026 bring kindness, constructive projects, and positive prospects for each and every one of you.

We would also like to introduce the new composition of the association's board:

Dr. Stéphane Daens, President Mr. David Leroy, DO, Secretary Ms. Tamara Sadighi, Treasurer

It is with commitment, humility, and enthusiasm that this new team is putting itself at the service of GERSED Belgium and its members.

We are aware that the past year has been marked by a more discreet presence on our communication channels. However, this period has also been a time for reflection, maturation, and preparation. New ideas, new projects, and renewed momentum are now in the works, with the aim of gradually revitalizing the association.

We would like to remind you that GERSED Belgium, an association composed mainly of healthcare professionals, aims to promote, explain, and raise awareness of Ehlers-Danlos syndrome among both patients and caregivers, in a spirit of sharing, scientific rigor, and kindness.

The future is built step by step, and we are confident that 2026 will be a year of renewal, collaboration, and meaningful projects for our community.

Thank you for your trust, patience, and support.

Let's continue to move forward together.

With our best regards,

The GERSED Belgium Office 🤍

Dear GERSED BELGIUM members,

The 2025 General Meeting (GM) will be held on Saturday, December 20, 2025, at the headquarters of GERSED BELGIUM, Ninoofsesteenweg 244, 1700 Dilbeek, from 2:00 p.m. to 3:30 p.m. 

In order to actively participate or give proxy to a member of your choice who will be present at the AGM, you must, as every year, be up to date with your membership fees for 2025 (€40 for healthcare professionals and €25 for non-healthcare professionals). 

Information on how to pay dues is available on the GERSED BELGIUM website: http: //www.gersedbelgique.com

Please send us an email to contact@gersedbelgique.com to receive the Agenda and the proxy document. 

The GERSED BELGIUM Board.