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European Organisation for Rare Diseases (Eurordis)

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Datum van de eerste revisie:

05 Feb 2006

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Datum van laatste bezoek:

20 Aug 2020

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Undiagnosed rare diseases
Many people around the world are struggling in search of a diagnosis1,2,3.
Find out below about:
The different groups of undiagnosed patients
The diagnostic odyssey
Why it is important for families to have a diagnosis
European & international undiagnosed initiatives
International Recommendations to Address Specific Needs of Undiagnosed Rare disease Patients
Additional information on genetics and & genomics
The different groups of undiagnosed patients
There are different groups of undiagnosed patients:
‘Not yet diagnosed’ refers to a patient whose disease has not been diagnosed because the patient has not been referred to the appropriate clinician due to common, misleading symptoms, or an unusual clinical presentation of a known rare condition.
‘Undiagnosed’ (Syndromes Without a Name or SWAN) refers to a disease for which a diagnostic test is not yet available; the disease has not been characterised and the cause is not yet identified. This patient can also be misdiagnosed as his/her condition can be mistaken for others. These conditions are also likely to be rare.
The diagnostic odyssey
Some patients live for months, years or in many cases, their entire lives with an undiagnosed condition. Obtaining a diagnosis can be a long and difficult journey4,5,6,7; a EURORDIS survey of eight relatively common rare diseases in Europe showed that 25% of patients waited from five to 30 years for a diagnosis, and during that time 40% received an incorrect diagnosis. Misdiagnosis results in inappropriate treatment and care options.
Living with an undiagnosed disease is often extremely challenging. A significant consequence of being undiagnosed revolves around the heartache and stress patients and their families experience, compounding feelings of isolation and exclusion that worsen with the chaotic journey through numerous referrals, investigations, and disease evolutions.
Why it is important for families to have a diagnosis
A diagnosis can serve as the key to unlocking access to effective medical and social care as well as to treatment. Getting the right and accurate diagnosis, even when there is no treatment, increases opportunities for patients to plan their future.
In situations where diseases are inherited, many families have several affected siblings. For these families, the absence of a diagnosis increases the risk and worry of having another child suffering from the same undiagnosed condition.
European & international undiagnosed initiatives
The following initiatives have been created to support the undiagnosed rare disease community:
SWAN Europe: Patient organisations unite to support the 65,000 children born with an undiagnosed genetic condition each year across Europe. SWAN Europe is a coalition of groups, organisations and support networks working with families and/or patients affected by syndromes without a name and/or undiagnosed genetic conditions. Find out more about the aims and current members of SWAN Europe, including EURORDIS. The current members of SWAN Europe are: AnDDI-Rares, Association Sans Diagnostic et Unique (ASDU), EURORDIS, FEDER, Hopen, Objetivo Diagnostico, Platform ZON, SWAN UK, and UNIAMO. Prospective members should contact
Undiagnosed Disease Network International (UDNI) was formed to address unmet needs of undiagnosed patients at a global level8. EURORDIS is developing a specific working group for patient engagement within UDNI in partnership with the Wilhelm Foundation and the US National Organization for Rare Disorders (NORD).
EURORDIS has joined forces with Microsoft in Health and Shire to launch the Global Commission to End the Diagnostic Odyssey for Children with a Rare Disease. The Commission will be co chaired by EURORDIS Chief Executive Officer, Yann Le Cam.
RareConnect Undiagnosed Diseases discussion group.
International Recommendations to Address Specific Needs of Undiagnosed Rare disease Patients
EURORDIS, together with SWAN UK (the support group run by Genetic Alliance UK), the Wilhelm Foundation, Rare Voices Australia (RVA), the Canadian Organization for Rare Disorders (CORD), the Advocacy Service for Rare and Intractable Diseases' stakeholders in Japan (ASrid) and the US National Organization for Rare Disorders (NORD) jointly created a list of recommendations to address the specific needs of patients without a diagnosis. These recommendations urge all stakeholders to recognise undiagnosed patients as a specific population within the rare disease community.
Additional information on genetics & genomics
Glossary of genetic terms - For clarification and lay definition of some terms used in genetics, the Patient Advisory Council of RD-Connect has put together a glossary of terms used within the project.
Genome editing
For an introduction to the topic of genome editing, see:
EURORDIS introduction on the topic of genome editing for rare disease patients
EURORDIS webinar on genome editing
EURORDIS workshop on gene therapy and genome editing. The workshop brought together patient representatives from across Europe with experts to discuss the scientific progress of these technologies and their relevance for rare diseases, as well as associated ethical, legal and social issues. Watch:
Part 1 -What is genome editing? The science and beyond
Part 2 - Ethical, legal and social issues
Part 3 - Perspectives of the biotech sector and regulatory aspects.
Video explaining how the CRISPR/Cas9 genome editing technology (McGovern Institute for Brain Research at MIT)
For more information on gene therapy, see the European Society for Gene and Cell therapy
Parent Project Muscular Dystrophy blog, ‘Finding Hope in CRISPR/Cas9’ Genetic Alliance UK ‘Genome editing: what does it mean for patients?’
1EURORDIS, The Voice of 12,000 patients (2009)
2 Survey on misdiagnosis, French Alliance for Rare Diseases (2016)
3Molster et al. (2016) Survey of healthcare experiences of Australian adults living with rare diseases
4FEDER, Spanish organisation for rare diseases (2015), Survey “Diagnostic delay remains one of the main concerns of families”
5Rare Disease UK: The Rare Reality – an insight into the patient and family experience of rare disease (2015)
6Black N, Martineau F, Manacorda T (2015) Diagnostic odyssey for rare diseases:
7Rare disease observatory, France, ‘The life health crusade : misdiagnosis’ 2011
8Taruscio D et al. (2015) Undiagnosed Diseases Network International (UDNI): White paper for global actions to meet patient needs, Molecular Genetics and Metabolism 116:223-225

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