European Patient Advocacy Groups (ePAGs)

Susana Carvajal Arjona

ERN Board (Chair)
Tubulopathies (Spain)
s.carvajal[at]hipofam.org

Hi, my name is Susana Carvajal Arjona, I live in Barcelona, I am the mother and caregiver of a 12-year-old boy with rare chronic kidney disease, I represent a community of patients affected by different types of familial hypomagnesemia and recently also patients with the Syndrome of Gitelman in Spain. 5 years ago I was one of the first Patient Advocates: ePAGs that joined the project of the European Commission of the Kidney Reference Network: ERKNet and for 2 years I have held the position of the ePags chair.

Uwe Korst

ERN Board (Co-Chair)
Autosomal dominant renal structural disorders (Germany)
korst[at]rare-kidney.de

Hello, I am Uwe and as a patient representative I am working for ERKNet since November 2019. I founded PKD-Germany in 2004, I am a founding member of PKD International. I suffer from ADPKD and was transplanted in 2011. I have a long-time experience with chronic kidney diseases in general and worked in several guideline groups (ERA, KDIGO and national).

Currently I am a board member of the national kidney patient’s association and responsible for Rare Kidney diseases.  For ERKNet I an ePAG and in the ERN Board.

Claudia Sproedt

Metabolic nephropathies, Paediatric CKD & Dialysis (Germany)
c.sproedt[at]leben-eben.com

My name is Claudia Sproedt. We live in Ratingen/Germany and our son (adult) has cystinosis, a rare metabolic disease affecting the kidney as well as other organs.  1991 we founded the German cystinosis patient organisation, 2018 cystinosis network Europe. Together with Marjolein Bos I represent patients with cystinosis and other rare metabolic diseases in ERKNet. Being a patient representative at ERKNet from day 1 (Jan. 2016), I was elected as a patient coordinator for 3 years 2018-2021. Currently I am a member of several workgroups. Always interested to get to know new people I hope YOU will be an ePAG at ERKNet soon.

Tess Harris

Autosomal dominant renal structural disorders, CAKUT & Ciliopathies (UK)
tess.harris[at]pkdcharity.org.uk

I’m Tess Harris from London. I have autosomal dominant polycystic kidney disease (ADPKD) and am the CEO of the PKD Charity UK, President of FEDERG (European Federation for Rare/Inherited Kidney Diseases) and PKD International. In ERKNet, I am the ePAG lead for the AD Structural Disorders and Congenital Malformations & Ciliopathies Expert Working Groups. My particular interests are registries, clinical practice guidelines and pathways, and patient reported outcomes (PROs). I sit on a number of clinical trial steering committees and am involved in several EU research projects.

Marjolein Bos

Metabolic nephropathies (Netherlands)
marjoleinbos[at]ziggo.nl

Hello, I am Marjolein Bos and I live in the Netherlands. I have an adult son with cystinosis. In 2000 the Dutch Cystinosis Group was founded. Later we extended our activities also to the Flemish part of Belgium. Now we are Dutch Flemish Cystinosis Group. Nowadays we also have a European Network: the Cystinosis Network Europe, with members from all over Europe.  I was very glad that ERKNet has been founded, a place where medical specialists, researchers and patient representatives meet. I attended right from the start. In all the past years we exchanged a lot of information not only on cystinosis but also on rare kidney diseases more general.

Manuel Arellano Armisen

Paediatric CKD & Dialysis (Spain)
marellano[at]alcer.org

Hello, my name is Manuel Arellano. I am from Pamplona, a little city in the north of Spain. I’m kidney patient since I was four but I was diagnosed twelve years later. In less than three months, I was undergoing hemodialysis sessions that lasted until 1993, when a compatible kidney arrived. That was my first kidney transplant. Due to different types of cancer, I started my second time of hemodialysis waiting for a new kidney transplant. It took place at the end of 2014. Since 2011 I am committed to kidney patients in many different associations. Currently, I’m vice president at the Spanish kidney patients’ Federation (ALCER) and member of the board meeting of many others related to chronic conditions and disabled people in Spain (POP) as well as Europe (EPF). In 2020 I began to collaborate with ERKNet as ePAG in pediatric CKD and dialysis work groups.

Johanna Rohlfing

Immune glomerulopathies (Europe)
nephieev[at]googlemail.com

I am Johanna Rohlfing and I live in Germany. I have an adult son with nephrotic syndrome. Since 2020, I have been accredited as a patient representative for rare immunological and hereditary kidney diseases as an ePAG. In the working groups of researchers and physicians, we hear the latest developments and can bring in aspects from the patients' point of view.

The work of ERKNet will lead to patients - no matter where they live in Europe - experiencing the best possible therapy and being able to implement it with the doctors who care for them. That is my hope. Networking on the levels of researchers, physicians and patients - enables knowledge exchange and preservation of the best possible, also holistically conceived care for patients. Researching paediatric nephrologists, including geneticists from the working groups, give lectures at patient congresses and thus reach those affected in Germany, Austria, Switzerland and Luxembourg (hybrid settings of the Elterninitative Nephie e.V. founded in 2009, member of EURORDIS since 2015, in order to give space to a "zebra" view of the disease, make it possible). Among other things, I am a board member of the Parents' Initiative.

Virginia Guillon

Tubulopathies (France)
contact[at]gitelbart.fr

Hello, I am Virginia Guillon, disabled by a rare kidney disease: a Bartter syndrome. I am the president of the Gitelbart association, which supports patients and relatives who are struggling with Gitelman or Bartter syndrome. Our association is involved in many projects to break the isolation caused by these rare diseases: ERKNET, EWENLIFE, COMPARE, MAPATHO, the creation of a children's book, brochures to raise awareness about our syndromes, the creation of video testimonials... Finally, I am very happy to be Bartter Patient advocate for the Tubulopathy ePAG group.

Etienne Cosyns

Tubulopathies (Belgium)
etienne-cosyns[at]live.com

I’m Etienne Cosyns, Father of a son having the Gitelman Syndrome. I’m board member of AIRG Belgium, a Belgium branch of an association helping patients having genetic kidney disease. I’ve also been patient representative for the KDIGO guidelines about Gitelman disease. Finally, since a couple of years, I’m Gitelman Patient advocate for the Tubulopathy ePAG group.

Antonio Cabrera Cantero

Tubulopathies (Spain)
consultas[at]hipofam.org

Hello, I am Antonio Cabrera, I live in Barcelona and I am the father of a child with familial hypomagnesemia with hypercalciuria and nephrocalcinosis ( a rare tubulopathie). I have been a member of the ERKNet ePAG group since 2017. At the national level, I am president of the Hipofam association and member of the board of directors of the Spanish Federation of Rare Diseases (FEDER), of the Kidney's patients federations (ALCER) and also of AIRG-Spain. I participate in many working groups on rare diseases, kidney disease, childhood and disability. My main motivation is to try to change reality and achieve more equity and a better quality of life for people who suffer from a rare disease and their families.

 

Christiane Mockenhaupt

Thrombotic mircoangiopathies (Germany)
christiane.mockenhaupt[at]ahus-selbsthilfe.de

Hello, my name is Christiane Mockenhaupt and I'm from Germany, living next to Aachen. I'm a mother of five children, one with an atypical hemolytic uremic syndrome – a very rare disease within the complement system, and I'm one of the founder of our German patient group “MPGN und aHUS Selbsthilfe” in 2014. I started working within ERKNet in December 2022 and I'm very enthusiastic to grow by learning a lot with international connections.

Francisco Jose Monfort Vilar

Thrombotic mircoangiopathies (Spain)
fmonfort[at]ashua.es

Hi, my name is Francisco Jose Monfort Vilar. I live in Valencia (Spain) and I am working for the Spanish Kidney Patients Association (ALCER ) established for and by patients with kidney disease. Also, I am the vice president of FEDERG and the president of Ashus Spain (ASHUA). I have been member of the ERKNet ePAGs since 2017 with aHUS patients. I participate in their society as well as support them.

Heidi Zealey

Hereditary glomerulopathies (UK)
info[at]alportuk.org

Hello, I am Heidi Zealey, I live in England and we have kidney disease in our family which was diagnosed as Alport Syndrome five years ago. It is a privilege to be a European Patient  Advocate for the European Rare Kidney Network (ERKNet) having been invited in 2020 to represent the patient community with rare kidney and hereditary glomerular diseases. I have a background in science and government and I am passionate about the advancement of knowledge and treatments to support patients and their families. I volunteer for the International Alport Syndrome Alliance and Alport UK.

Flavia Galletti

Autosomal dominant renal structural disorders (Italy)
flaviag.airp[at]renepolicistico.it

I’m Flavia Galletti. Both my children and my husband have ADPKD. I am a member of the board of the Italian association supporting patients affected by all forms of polycystic kidney disease (AIRP - Associazione Italiana Rene Policistico)  like ADPKD or ARPKD. I am also a member of the board of PKD International, the global alliance for patients, doctors and associations which are involved or affected by all forms of PKD. In 2019 I also joined the ePAG forces at ERKNet.

Karlheinz Steinecker

Autosomal dominant renal structural disorders (France)
karlheinz.steinecker[at]nordnet.fr

Hello, my name is Karlheinz Steinecker, I am representing AIRG France at ERKNet. I suffer from ADPKD and after my retirement, I started volunteering at AIRG France, which covers all genetic kidney diseases. In 2019 I became a board-member of AIRG France and currently, I am representing this patient organization on the European level. I am a board member of FEDERG (European federation of patient organizations on genetic kidney diseases), and an ePAG-member at ERKNet.

David van Bennekom

Metabolic nephropathies (Netherlands)
davidvanbennekom[at]gmail.com

Hello, My name is David van Bennekom. Since 2022 I represent ‘Dent Disease’ within ERKNet. As a ‘supporting partner’ I’ll try to align the issues addressed by US patent organization (Dent Disease Foundation) with the work and discussions within ERKNet. Being a father of two boys (Ruben, 2012 and Oliver, 2015) with Dent (type 1) I am focused and committed to help to improve therapies and treatment for this disease. The medicines my sons take daily, are for the most part experimental and not specifically made for Dent Disease. It would be great if research could be done to “design” medicines that target specifically Dent Disease. Contact me for issues and questions regarding Dent Disease.

Michel Schenkel

AD structural Disorders (Belgium)
michel.schenkel[at]skynet.be

Hello, I am Michel, living in Belgium, and secretary of FEDERG since its fondation. I am also member of AIRG and a liver transplant association. Family members are impacted by ADPKD-pkd2 or other rare disease. I attended physical or virtual meetings at global or national levels (incl. Belgium, France, Germany, The Netherlands, Switzerland) about multiple diseases, or common aspects like HTA or medical records.

Christian Scheidler

AD structural disorders (Germany)
Christian.Scheidler[at]outlook.de

Hello, my name is Christian Scheidler living in Berlin. I am the father of a 25-year-old girl with rare chronic kidney disease. Our daughter suffers from ADTKD which stands for Autosomal Dominant Tubulointerstitial Kidney Disease. Due to some misfolded genes, a certain protein is not properly removed from the tubule cells, which leads to cell damage and finally to a kidney failure. Together with my wife, we have founded a European patient organisation for this very rare disease, the webpage www.adtkd.de serves as our main communication media. We are in close contact with the US patient organisation and US-researchers working on the treatment of ADTDK. A clinical trial with a certain substance is expected in the next years, giving hope for ADTKD patients in the mid- and long-term. I am also Patient Advocate for ADTKD in ERKNet.

Mireira Vicenta Carratalá Ríos

Trombotic microangiopathies (Spain)
mcarratala[at]ashua.es

My name is Mireya, I live in Castellón, near Valencia, and I am the secretary of the Association for Atypical Hemolytic Uremic Syndrome in Spain. I am the mother of an adolescent with this disease. My family is a carrier of the mutations of this disease. The Ashua Association is currently ten years old and represents all patients and families with this disease. In addition, Ashua belongs to the Spanish kidney patient’s Federation ALCER and European Federation from genetic renal Disease FEDERG together with several colleagues from this group we are within the EPAGs in Erknet both in and Pediatric dialysis and now hold the position of leader in the TMA group.

Renée de Wildt

Trombotic microangiopathies (Netherlands)
dewildt[at]nvn.nl

Hi, my name is Renée de Wildt and I’m working for the Dutch Kidney Patients Association (NVN). The NVN is established for and by patients with kidney disease, their relatives and kidney donors. Our mission is to allow people with CKD to reach a higher quality of living, receive excellent care, and participate in society as well as support them in self-management. Our mission also includes ensuring that new research, policy and care actually benefits the patients for whom it is developed. Although we are there for all people living with a kidney disease, we also have a strong focus on rare kidney diseases. We have several working groups focusing on specific rare kidney diseases. These working groups comprise of people living with a rare disease (both patients and relatives) and advocate the interests and needs of their fellow patients. I’m supporting and helping several of these groups and represent them within ERKNet. I’m currently involved in several ERKNet working groups; TMA, CAKUT, tubulopathies and immune glomerulopathies.

Tina Verschuere

Metabolic nephropathies (Belgium)
tverschuere[at]hotmail.com

Hello, I’m Tina Verschuere. My husband and I have 2 children and 1 foster child. Our son has been diagnosed with Lowe syndrome, after a long search. Our doctor put us in touch with ERKNet. I am a patient representative for Lowe syndrome and in 2023 I became an ePAG representive within ERKNet.

Rossella Ferrari

Hereditary glomerulopathies (Italy)
rossella.asal[at]gmail.com

I am Rossella Ferrari, I live in Italy and I am the mother of two boys, one with Alport Syndrome.

I volunteer for ASAL the Italian Association of Alport Syndrome, of which I’m delegate for international relationships. I’m a member of the Alport Syndrome International workshop committee. 

I’m really happy to join the European Patient Advocacy Groups (ePAGs). This represents an important opportunity to give voice to Italian Alport patients (their needs, concerns, limitations, hope), and share experiences with the international community of patients with rare kidney diseases. 

Karsten Vanden Wyngaert

Transition Taskforce (Belgium)
Karsten.VandenWyngaert[at]uzgent.be

Hello,
I’m Karsten Vanden Wyngaert and I live in Belgium. I was diagnosed with an IgA Vasculitis at the age of 11. In 2019, I founded a patient organization for young people with a chronic (rare) kidney disease within the structures of an already existing adult association (i.e. vzw. Nierpatiënten).

Because of my experience with the current healthcare systems not being tailored to the level and specific needs of adolescents and young adults with a rare kidney disease, I decided to apply for an ePAG position at ERKNet, so that young patients’ voices are being heard and taken into account when designing and researching new therapeutic strategies.

In 2023, I began collaborating with ERKNet and I will continue to act as an advocate for young people with a rare kidney disease.