Information for the Undiagnosed

Get information on an undiagnosed rare condition?

Internationally, people experience a challenging journey in trying to reach a diagnosis for a rare disease and with more rare conditions, a diagnosis can often take many years. In Ireland there is limited information available for those who have an undiagnosed condition. However, an American information resources for undiagnosed may help you access reliable information on undiagnosed rare conditions.

There are specialist services provided by HSE in Ireland that your GP may be able to direct you to that are relevant to your condition.

Supports for the Undiagnosed

The journey to reach a diagnosis can be isolating and patients often need further supports, here are links to psychology and counselling services that may help you

HSE Mental Health Services

Supports and services to promote positive mental health in Ireland

There are support groups for those with an undiagnosed condition such as Syndrome Without a Name (SWAN) or the SpecialNeeds Parents Association.

The Global Genes Project has developed a resource for people with undiagnosed conditions called "Becoming An Empowered Patient: A Toolkit For The Undiagnosed"

At the European level there is support from EURORDIS which is a non-governmental patient-driven alliance of patient organisations and individuals active in the field of rare diseases, dedicated to improving the quality of life of all people living with rare diseases in Europe.

EURORDIS Rare Disease International (RDI) aims to help people living with a rare disease worldwide and their families to experience increased public health services and support.