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decision of the European Parliament
Petition 0439/2009
EUROPEAN PARLIAMENT 2009 - 2014
Committee on Petitions
26.10.2009
NOTICE TO MEMBERS
Subject: Petition 0439/2009 by Elsa Aimone (Italian), bearing 86 signatures, on Tarlov
cyst patients
1. Summary of petition
On behalf of Tarlov cyst patients, the petitioner is seeking official recognition of this disorder
as a rare syndrome, pointing out that Tarlov cyst patients suffer chronic pain and that no adequate treatment is available. She is accordingly seeking European funding for research, the creation of a forum for patients with this syndrome and measures to alleviate the chronic pain suffered by them. She takes the view that health care is a fundamental right and that the
prevention or at least alleviation of suffering must be a policy objective.
2. Admissibility
Declared admissible on 26 June 2009. Information requested from Commission under Rule 202(6).
3. Commission reply, received on 26 October 2009.
Tarlov cysts are sacs filled with cerebrospinal fluid that most often affect nerve roots in the
sacrum, the group of bones at the base of the spine. However, it is estimated that 70% of the
cysts observed by MRI cause no symptoms. Tarlov cysts may become symptomatic following
shock, trauma, or exertion that causes the build-up of cerebrospinal fluid. For these reasons
there has been some controversy in classifying Tarlov Cysts as a rare disease. The EU criteria
(a disease with a prevalence of not more than 5 per 10 000 of population in the EU as set out
in COM(2008) 679) is not fulfilled by the asymptomatic cases, but may be met by the
PE430.509v01-00 2/2 CM\794569EN.doc EN
symptomatic cases. However the absence of studies on the prevalence and incidence of this disease prevents any formal conclusions on this point.
Following this, the database Orphanet will introduce, at the request of the European
Commission, in the coming months all the relevant information related to Tarlov cysts (availability of professional services in the EU, centres of reference, orphan drugs, expert clinics, etc.). It should be clarified that the Orphanet database is not the 'European register of rare diseases' as mentioned in the petition, but a repertory of diseases, specialised outpatient clinics, diagnostic laboratories, support groups in urope, etc. supported by the European Commission in the terms provided by the Commission Communication COM(2008)679 "Europe's challenges and the Council Recommendation on action in the field of rare diseases"of 9th June 2009.
However, it is clear that Tarlov cysts,regardless of their classification as rare disease or not, is
a disease with a lack of specialised centres, health professionals and treatment options as well
as unmet research needs.
Under the conditions defined by the work plans of the Health Programme 2008-2013,
proposals to create a European Network for actions in favour of the Tarlov cysts patients,
which can include stakeholders dialogue for improvement of treatment, research, mobility of
knowledge, etc., may be submitted.
Should such a proposal be retained for funding, this may help to improve the situation in the
future.
"Individually, we are one drop. Together, we are an ocean".Ryunosuke Satoro
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