European Cavernoma Alliance

- a network of national patient advocacy associations -

Science for the non-scientist webinar:
"
Recent Cavernoma science developments"
Thursday, 23rd September 2021
7pm GMT / 8pm Central European Time

Join CAUK's webinar on Thursday, 23rd September @7pm GMT (UK, Ireland, Portugal)/@8pm Central European Time, where David White will take you through all you need to know about the latest cavernoma research.

Please register by sending an email to
events@cavernoma.org.uk.

David White is a cell biologist with a major interest in neurophysiology; the major part of his career was as a research scientist and lecturer at the University of York, with a period as Director of Science at the UK biological Research Council (BBSRC). He has been retired since 2009 and is now Scientific Advisor to CAUK. David White has been a member of Cavernoma Alliance UK - CAUK since his wife, Pat, was first diagnosed with cavernoma in 2007. He has been a Trustee of CAUK since 2013.

Our vision, mission, values & goals

We envision a future:

  • in which every cavernoma patient in Europe will easily find access to specialist doctors who are well-informed about the disease AND about ongoing research

  • in which researchers, doctors and patients have joined forces to improve care and find a cure.

Mission:

As a European network of national patient advocacy organisations, it’s our mission to empower cavernoma patients in Europe by providing them with high-quality information, resources, tools and emotional support. We promote creative, yet strategic interventions and stimulate productive collaborations between researchers, patients and clinicians in order to accelerate better care, treatment options and ultimately to find a cure for cavernoma.

Values:

The values of ECA are to be Collaborative, Informative, High quality, Empowering, Supportive and Trustworthy.

Goals:

European Cavernoma Alliance is a network of cavernoma patient advocacy groups that are working together to improve the lives and prospects of cavernoma patients (and their carers) by adopting the following goals:

  • To promote the creation of CCM centres of expertise across Europe

  • To promote therapeutic care pathways at European level and national emergency guidelines for better early intervention after a haemorrhage stroke caused by a cavernoma

  • To stimulate research and development of treatments by increasing the communication between patients, researchers and clinicians

  • To help countries without a local cavernoma patient association to form their own association

  • To raise awareness of cavernoma among the medical community and public.


Articles

June 24th, 2019: News, Asociación Española de Cavernomas (in spanish)

Fall 2019: Angioma Alliance Fall Newsletter (page 15)

May 2020: Abstract submitted to the European Conference on Rare Diseases and Orphans Drugs (ECRD) 2020


About Cavernoma

Fast Facts (Angioma Alliance)

Patient brochure (Angioma Alliance)

CCM Care Guidelines (Angioma Alliance)


Organisations and patient groups

Kavernøs Angiom Norge (KAN)

Kavernoomat Suomi

Bergholtz_Final_28feb.pdf

Insights

People with cavernoma (also known as cavernous angioma or cerebral cavernous malformations, CCM) typically arrive at emergency care with stroke-like symptoms such as paralysis and neurological deficits (e.g., vision or speech impairment). Others have epileptic seizures or serious headaches. It often takes a long time until we get the right diagnosis, because an MRI scan is needed (a CT scan is not enough!).

In this article, Jana Bergholtz (founder of Cavernöst Angiom Sverige-CASE, Sweden and currently leading the efforts of the European Cavernoma Alliance) talks about what cavernomas are, our search for equal access across Europe, more clinical research and better person-centred care. Even though there is still no treatment except neurosurgery, we are certain there is a solution, not only for us, but many others with cavernoma, still undiagnosed.

Read the full interview by Neha Dave.

Covid-19 & Cavernoma

The European Cavernoma Alliance is a network of national patient advocacy organisations.
Each national organisation is legally responsible for GDPR.