Happening soon – April 28: Don’t miss our webinar on headache in Moyamoya Angiopathy!

Persistent headaches are a common but poorly understood symptom for many people with Moyamoya angiopathy.

Join us on Monday, April 28 at 17:00 CEST for a free webinar with leading neurologists Prof. Anne Hege Aamodt and Dr. Dominique Hervé. They will explore this challenging symptom and share the latest research insights that might help improve the quality of life of people living with Moyamoya.

April 28, 2025 – Upcoming webinar: Headache in Patients with Moyamoya Angiopathy, open to healthcare professionals and interested participants. Register here | May 13, 2025 – Upcoming webinar: VASCERN MSA-WG: Empowering you to live better with vascular Ehlers-Danlos syndrome (vEDS) – Unlock the knowledge you need, open to patients, caregivers & families. Register here

April 28, 2025 – Upcoming webinar: Headache in Patients with Moyamoya Angiopathy, open to healthcare professionals and interested participants. Register here | May 13, 2025 – Upcoming webinar: VASCERN MSA-WG: Empowering you to live better with vascular Ehlers-Danlos syndrome (vEDS) – Unlock the knowledge you need, open to patients, caregivers & families. Register here

April 28, 2025 – Upcoming webinar: Headache in Patients with Moyamoya Angiopathy, open to healthcare professionals and interested participants. Register here | May 13, 2025 – Upcoming webinar: VASCERN MSA-WG: Empowering you to live better with vascular Ehlers-Danlos syndrome (vEDS) – Unlock the knowledge you need, open to patients, caregivers & families. Register here

Home - Network - Rare Disease Working Groups - Paediatric & Primary Lymphoedema (PPL-WG) - Experts & Centers - Full Members

Paediatric & Primary Lymphoedema (PPL-WG)

Introduction Diseases covered

Experts & Centers

Full Members Affiliated Partners Developing Partners Supporting Partners Patient Representatives Map of Centres

Clinical Decision Support Tools

Patient Pathways Do’s and Don’ts Clinical Practice Guidelines (CPGs) adopted Clinical Expert Consensus Statements Written Clinical Outcome Measures

Research

Clinical Trials and Observational Studies Research Publications

Training and Education

E-Learning Pills of Knowledge (PoK) Webinars

Full Members

Working Group Leads

Robert J. DAMSTRA 16

Chair

Dr. Robert J. DAMSTRA

Dermatologist

Sarah THOMIS

Co-Chair

Pr. Sarah THOMIS

Vascular Surgeon

Members

Belgium

AZ Sint-Maarten, Mechelen

PPL European Reference Center, Lymph Center

Robert J. DAMSTRA 13

Dr. Guido GIACALONE

Vascular Surgeon

Florence BELVA

Dr. Florence BELVA

Vascular Surgeon

UZ Leuven, Leuven

PPL European Reference Center, Center for Lymphedema

Sarah THOMIS

Pr. Sarah THOMIS

Vascular Surgeon

Nele Devoogdt

Pr. Nele DEVOOGDT

Physiotherapist

Denmark

Bispebjerg Hospital, Copenhagen

PPL European Reference Centre, Department of Dermatology and Wound Healing Centre

Robert J. DAMSTRA 9

Dr. Tonny KARLSMARK

Clinical Associate Professor

Dr. Christoffer NISSEN

Dermatologist

Finland

Helsinki University Hospital, Helsinki

PPL European Reference Centre, Department of Plastic Surgery

Sinikka SUOMINEN

Pr. Sinikka SUOMINEN

Plastic Surgeon

Dr. Susanna KAUHANEN

Plastic Surgery Specialist

France

AP-HP Hôpital Européen Georges Pompidou, Paris

PPL European Reference Center, Hôpital Cognacq-Jay

Stéphane VIGNES 2

Dr. Stéphane VIGNES

Specialist in Internal Medecine Lymphology

Caroline FOURGEAUD 1

Dr. Caroline FOURGEAUD

Vascular Physician

Germany

University Medical Center Freiburg, Freiburg

PPL European Reference Center, Földi Clinic

Robert J. DAMSTRA 4

Dr. Michael OBERLIN

Specialist in internal medicine Wound Management / Lymphology

Netherlands

Nij Smellinghe Hospital, Drachten

PPL European Reference Center, Expertise Center for Lymphovascular Medicine

Robert J. DAMSTRA 16

Dr. Robert J. DAMSTRA

Dermatologist

Kirsten VAN DUINEN 1

Dr. Kirsten VAN DUINEN

Dermatologist