Patient-WG

VASCERN Patient Group (ePAG)

Patient empowerment is important to collect the most pertinent information and allow patients to take part in making the management of their disease evolving in the most efficient manner.

The VASCERN Patient Group (ePAG, European Patient Advocacy Group) gathers Patient representatives and Patient Organisations in Rare Multisystemic Vascular Diseases.

The Patient Group has a Chair, 5 Co-chairs (one per Rare Diseases Working Groups – RDWG), ePAG representatives and ePAG members.

The Patient Group enables Patient representatives to work together on common issues and deliverables, as well as to be involved in all VASCERN activities. The Patient Group Co-chairs are also members of the respective RDWG.

Chair & EPAG

Paolo FEDERICI
Associazione Fondazione Italiana HHT ‘Onilde Carini’, Italy

HHT Onilde Carini is a support and mutual help among patients with hemorrhagic telangiectasia. It is a means of spreading knowledge of the disease among patients, their families, and among physicians. It is supporting clinical and genetic research to promote the care and treatment of patients with HHT. See: leaflets

HHT Italy Newsletters & videos

Contact:
HHT – Associazione Fondazione Italiana HHT “Onilde Carini”
Via San Giovanni n° 38 – 29100 Piacenza – Italy.
Phone: ++39 349 7181943
President: Andrea Giacomelli

Hereditary Haemorrhagic Telangiectasia (HHT)

HHT Patient Associations are also members of HHT Europe and EURORDIS.

Claudia CROCIONE, Patient-WG co-chair for HHT is member of the HTT-WG.

Riet ALAVERDY
De Hart&Vaatgroep, Netherlands

The Diagnosegroep ROW (HHT) is part of De Hart&Vaatgroep, the Dutch organization for patients with heart and vascular diseases. Every two years we organize together with the ROW-Centre a conference with approximatively 250-300 HHT-patients and their partners to give information about the outcome of the two-years international conference of the HHT Foundation. And every year we organize, also together, a conference for approx. 60 HHT-patients about subjects like stress, tiredness, anticoagulation, etc. in relation to HHT.
Two times per year we issue the ROW Newspaper with articles written by the physicians of the ROW-Centre or others, interviews with HHT-patients, etc.
And, of course, we publish as much as possible in order to make our general practitioners and unknown ROW-patients aware of the fact that nosebleedings could mean that this could be the rare and dangerous illness of Rendu-Osler-Weber. For many of our general practitioners still do not know this disease. For this reason we distribute a lot of booklets about ROW and even a medical brochure especially for general practitioners.

EPAG

Luisa BOTELLA
Asociación HHT España, Spain

Our Association was formally constituted on April 2005, as “Asociación HHT España“. It is constituted by, Hereditary Haemorrhagic Telangiectasia patients, their families, friends, and some physicians and researchers involved directly in the disease. When inscribed in the register of associations at this time, the group was small. The board was formed by the president, the vicepresident and the treasurer, and around 20 associates. It is a national association, representing all the communities of Spain, and  associates from Latinoamerican countries.
It was declared of Public Utility, or Non Profit Organization, in 2011.
We belong to Eurordis, and also to HHT-Europe transnational group. We are linked to doctors and researchers, forming one unit: the Spanish HHT Unit, with three main parts:
Clinical part: physicians and specialists on HHT from the main Hospital, Sierrallana/Valdecilla, Cantabria (North Spain), but also from other more recently HP, in Madrid, Catalunya and Canary Islands.
Research: mainly conducted in the Centro de Investigaciones Biológicas in Madrid, belonging to the National Research Council of Spain, CSIC
Association, whose executive committee is now formed by the president, Mr Bienvenido Muñoz, the vicepresident, Mr Eder Castro, the secretary Mrs Ana-M. Carrera, the treasurer, Mr Manuel Machado and as additional member, Mrs, Rosa del Río. We have also a board of experts, or advisory board, formed by former president, vicepresident, and secretaries, by doctors coordinating the units of the Hospitals specialized in HHT, and by researchers of CSIC.
We celebrate national assemblies once a year, with associates, doctors and researchers. Last was held in Madrid, October 2015.
Information at: info@asociacionhht.org

Co-chair

Claudia CROCIONE
HHT Europe
Associazione Italiana Teleangectasia Emorragica – HHT ONLUS                               Contact : info@hhtonlus.org

Means of ActionThe Objectives of HHT Europe are:
– To represent, protect and enforce rights and interests of people with HHT at a European level;
– Building a strong pan-European community of people living with HHT;
– Spreading awareness of HHT;
– Improving access to information, services, diagnosis treatment and care ;
– Promoting the exchange of good practices;
– Improvement of Treatments and knowledge of the disease in the medical comunity;
– Finding a cure.

The Association will use all means authorized by the law, which may contribute to the achievement of its goals, notably:
– Fostering, supporting and if necessary managing HHT Centres across Europe;
– Fostering the creation of Patient Associations in European countries that do not present one;
– Coordinating professional expertise and exchange within Europe and Internationally;
– Encouraging and fostering Joint clinical trials and research across Europe;
– Promoting educational programmes and training for Medical Staff and Patient Organizations;
– Organizing International Congresses;
– Promoting and managing contact between HHT Organizations;
– Collecting, disseminating and translating information on HHT;
– Other such things approved by the board that will further the objects of HHT Europe;
– Collecting data.

Caz COXALL
HHT UK

Amro, France

EPAG

Christina GRABOWSKI
Morbus Osler, Germany

morbsThe German organisation for HHT, Morbus Osler Selbsthilfe e. V., is a patient-driven alliance of affected individuals with the support of medical fraternity, in the field of HHT.

Morbus Osler’s mission is to build a strong community of patients, witch are able to help other people living with HHT, to be their voice at the German level, and – directly or indirectly – to fight against the impact of HHT on their lives.

To this end, Morbus Osler Selbsthilfe e.V. undertakes activities on behalf of its members, notably in favour of:

  • Empowering HHT patient groups
  • Advocating HHT as a public health issue
  • Raising public HHT awareness, and also that of national and international HHT institutions
  • Improving access to information, treatment, care, and support for people living with HHT
  • Encouraging good practices in relation to these
  • Promoting scientific and clinical HHT research
  • Developing HHT treatments and orphan drugs
  • Improving quality of life through patient support, social, welfare and educational services

contact: info@morbus-osler.de

Diana LAWSON & Matthew FLETCHER
Telangiectasia Self Help Group, UK

 

Other HHT Patient Organisations
Denmark: Osler.dk
Ireland: Grace Nolan Foundation & HHT Ireland (Dara WOODS)
Norway: Osler.no
Sweden: under construction
Switzerland: under construction

Canada: HHT Canada THH
US: Cure HHT

Heritable Thoracic Aortic Diseases (HTAD)

HTAD Patient Associations are also members of EURORDIS and Marfan Europe Network.

Valentina FAVALLI, Patient-WG co-chair for HTAD is member of the HTAD-WG

Co-chair

Valentina FAVALLI
MAGICA ONLUS, Italy

Magica was founded in 2006 by a 33 y.o. patient of CMGCV, Matteo, affected by Marfan Syndrome. After a check-up, while speaking with the director of the center Eloisa Arbustini, he had the idea to create an entity to sustain the families followed by the Center who suffered inherited cardiovascular diseases like him.

Magica’s main objectives are:

– To guarantee continuity of care over time both in terms of supporting the continuity of the clinical activity of the center and in terms of helping patients to sustain costs for clinical check-ups.
– To provide correct information on these disease to patients and to general practitioners.
– To promote solidarity both among patients and other charities creating charity networks.
– To foster the development of research on heritable cardiovascular diseases through voluntary donations.

Put your heart into the play with us.

Maria Carla FAVINI
J PETER ONLUS
AssoMarfan, Italy

EPAG

Patrice TOUBOULIE
MARFANS, France

 

Medium Sized Arteries (MSA)

MSA Patient Associations are also members of EURORDIS.

Vascular Ehlers Danlos Syndrome is the main disease included within the scope of the MSA-WG. The scope will include afterwards other disorders, namely: Kawasaki Disease, Coronary Arterial dissections (spontaneous), Fibromuscular dysplasia.

EPAG & Co-chair

Juergen GRUNERT
Ehlers-Danlos-Initiative e.V., Germany

The Society was founded in 1996 by a couple of parents and concerned people. Today we have more than 300 Families and Individuals as Members. We have a medical-Scientific committee, a strong group for adolescents and young adults and are represented nearly all over Germany. The main goals of our work are:

  • Rising awareness for the disease in the public, at medical professionals and researschers
  • Assisting EDS patients finding diagnosis and support/assistance/treatment
  • Supporting studies
  • Connecting with international patient organisations

All work is done by volunteers, no full-time employees.

Other MSA Patient Organisations

Denmark: Ehlers-Danlos foreningen
France: AFSED
Germany: Ehlers-Danlos-Selbsthilfe e.V.
Italy: AISED Ehlers-Danlos
Spain: ASEDH
Sweden: Ehlers-Danlos syndrom Riksförbund

 

Pediatric and Primary Lymphedema (PPL)

PPL Patient Associations are linked to the International Lymphoedema Framework (ILF).

Natascha Assies
Dutch Lymphedema & Lipoedema Network (NLNet)

NLNet (Nederlands Netwerk voor Lymfoedeem en Lipoedeem) was founded in 2006. Their vision is to be an independent platform to provide (scientific) knowledge, national and international guidelines and experiences on lymphedema to patients, patient organizations and care workers.

Every two years NLNet organizes a national congress for patients, care workers and the industry who is involved in lipedema and lymphedema. Besides that, there are at least two support groups in almost each county of the Netherlands.

The board members of NLNet have their own portfolio, so all areas in which NLNet is involved, is covered by one of the members. For instance, there are different board members for science, lymphedema, lipedema, the younger patient group and support groups.

Representative names to be confirmed

Other PPL Patient Organisations

France: AVML
UK: British Lymphology SocietyLymphoedema Support Framework
Netherlands: NLNet

Vascular Anomalies (VASCA)

VASCA Patient Associations are also members of EURORDIS.

Caroline VAN DEN BOSCH, Patient-WG co-chair for VASCA is member of the VASCA-WG.

Petra BORGARDS & Elisabeth HUHN
German Association of Vascular Anomalies, Germany

GERVAS is an association of patients, relatives, friends and physicians, who engage for better living conditions of patients suffering from vascular anomalies and her families. GERVAS designs information opportunities that facilitate the everyday life with the disease in addition to medical care by specialists:
– Regular meetings of patients, physicians and interested people, where information and experiences can be exchanged and common leisure events were offered.
– Advice by telephone, mail, post deployment experiences, helpful addresses or contacts.
– Publishing a “magazine”, website and newsletter.

 

Anne-Marie MONAMI
VASCAPA, Belgium

VASCAPA was founded on 5th May 2012 in Brussels, under the leadership of Prof. Boon and Prof. Vikkula.

The purpose of our association is :

  • to disseminate maximum information regarding vascular anomalies (tumour or malformation) to the general public
  • to refer people suffering from these diseases to specialized centres
  • to put in contact with patients willing to share their daily difficulties with others facing similar situations
  • to guide patients in their administrative procedures
  • to ensure readiness to listen, encourage, share
  • to create supports, information tools
  • to make known these rare diseases to health professionals
  • to stimulate research and reduce ignorance
  • to improve medical care
  • to ensure patients care even outside of Belgian and European borders

Our tools :

  • website : click here
  • email address : click here
  • informative folders
  • newsletter
  • individual support when visiting Prof. Boon

EPAG

Rafaella RESTAINO
Fondazione Alessandra Bisceglia W ALE Onlus, Italy

I’m the President of the Alessandra Bisceglia’ Foundation whose aim is the study and treatment of vascular anomalies. We have two centres, “Stanze di Ale”, where we carry out free medical advice about vascular anomalies, we have several projects of assistance to families and patients (helpline, psychological support) and we fund research too. We believe in networking.

Co-chair

Caroline VAN DEN BOSCH & Maria JONGMA
HEVAS, Netherlands
· Our medical advisors can be found here
· The specialised doctors working in our field can be found here

· The patient organisations HEVAS is working with in our national and/or European networks can be found here
amongst others:
– SKTN Stichting Klippel-Trénaunay Nederland (Klippel-Trenaunay the Netherlands)
– Nv WSWs Nederlandse vereniging voor mensen met een Wijnvlek of Sturge-Weber syndroom (Portwine stain and/or Sturge-Weber Syndrome)
· Other relevant organisations HEVAS is associated with:
– HEVAS is working together with VSOP since 2012. VSOP is the Dutch representative of 66 patient organisations of rare diseases and member of EURORDIS
– HEVAS is member of ISSVA: The International Society for the Study of Vascular Anomalies. The term anomalies encompasses hemangiomas and vascular malformations.

Other VASCA Patient Organisations

Finland: Suomen Klippel-Trenaunay ry

  • Governance: Patients are represented in VASCern governance as well as in the Patient-WG, which is expected to participate actively and give patients and families views. WG Members represent Patient Organisations and will mainstream information in order to maximise the interactions between the ERN and patient associations.
  • The Patient-WG will implement its own road map as there are common issues to be tackled and shared; inform the Board and Council of difficulties they see and be involved in Ethical issues, to balance patient and clinical needs appropriately.
  • Care: Promote, encourage a patient-centric approach in clinical care, service improvement, strategic development, decision-making, ensure the need of rare disease patients are considered and included in discussions and activities, Contribute to the development and dissemination of information to patients, from policy to good practices, care pathways and guidelines.
  • Research: Contribute to define research priority based on what is important to patients and families, ensure patients are embedded in the research activities, assessment of clinical trials and ethics committees, contribute to dissemination of research activities and outcomes, especially to patients
  • Evaluation: Ensure feedback, evaluation based on patient experience, reviewing the ERN performance by receiving and reviewing quality indicators, access times to diagnostic and treatment, clinical outcomes, evaluation of how the ERN acts based on these feedbacks, through the ePAG, Patient-WG, patient experience surveys, in order to redefine and prioritise ERN activities. To give as much information as possible to patients, a social forum should be established on the website. Patients should be aware of what should/should not be done for appropriate diagnosis and care.
  • As Expert patients, they are best placed to educate patients and families on the management of their diseases. They can identify and recommend expert centres or other HCPs.