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The European Network of Rare Disease Help lines

The Rare Disease Solidarity brought together Rare Disease Help line representatives from all over Europe to form a network which aiming to increase awareness, efficiency and best practice standards for its members.

Why Help lines?

‘A diagnosis, one life changing sentence can bring isolation; and fear for what might follow’.

Being told that a ‘rare condition’ is in your family is devastating and isolating. Most families, doctors, health professionals throughout Europe will have never heard of these rare conditions that can change lives forever: Few will know a person with a rare condition; few professionals will have received training, for many they will suffer for years before a diagnosis is made often with only supportive treatment and no cure in sight; always seeking hope and a cure, where do they go?

Over the past two years; a truly amazing collaboration has been achieved; quietly and with dedication, Help line organisations have been sharing their expertise and building for the future, drawing from expertise gathered from Help line services across Europe and recognizing the ever changing needs of families/patients, a united group of Help line experts are forging a community which shares and advises Help lines and patients

Reducing isolation by linking people together, advising other Help lines on good practice and self assessment and encouraging quality advice for anyone who seeks information, support, contact and someone else who understands

Advice is now available to anyone who is seeking to set up a Help line or information point, guidelines for best practice are here, continuing support from existing Help lines will continue after 2008.

“I was so alone, I thought I was the only mother in the world who knew about Tay Sachs disease, when I phoned you, you were the first person to ever understand, I know there are no cures for these diseases, but at least I know I am not alone”, says a caller.

Why a European network?

By working together on a European level Help lines can pool their best practice resources, particularly in the domain of training and experience with data capture tools. Models can then be applied to any new association trying to set up a Help line for their members, the beginners can learn from the more experienced, and callers can be re-assured about the constant commitment to quality service.

Help lines represent a direct line with the rare disease community and it is through this medium that isolated patients can be identified and put in contact with other isolated patients. By working together on a European level, the chance of linking these, sometimes desperate patients, is considerably increased.

Information for users: How can you use Rapsody?

The European Network of Rare Disease Help lines has looked at ways of increasing awareness of their services amongst European citizens.

Users of Help lines are patients, parents, carers, health care professionals, media, friends…

Please visit the section on Help lines at www.eurordis.org. Follow the logotype “Help lines for Rare Diseases” represented by the blue dolphin.

There you will find responses to:

  1. Who should I contact? A European cartography of Help lines for rare diseases, with a listing of the diseases they provide information about, their operating hours and their contact details.
  2. What information can I get? Help lines that participate in the network will share common resources and materials. By contacting one of them, you may receive written information that was sent to a user who called on the same issue as yours or you can get access to relevant documentation from all over Europe'.
  3. .How to ensure quality of the information I receive? Help lines in the Rapsody network have agreed to share quality standards. Their operators are trained on how to find quality and validated information on the internet. Help lines also share common standards regarding protection of your privacy and confidentiality of the medical information they receive from you.
  4. .Can I talk to an operator who speaks my language? As patients sometimes live in a different country than their country of origin, or when travelling to a different country for holidays or for medical reasons, you may need information in your own language, wherever you are. The Help lines network will help you to contact the operator that can best help you. 

Contacting someone with the same condition, and fighting isolation

Rapsody can also help you to contact a patient or a family with the same problem as yours, in Europe. There are more and more patient organisations, but not always where you live, and not for all rare diseases. How does this work

When you contact a local Help line participating in the Rapsody network, you will ask for assistance to establish contact with a person with the same disease or same concern. The Help line will ask a few questions, and will contact other European Help lines at regular intervals to check whether they have received a query regarding the same disease .

If a match is found, you will receive a pseudonym that you can use to log on to a dedicated web forum. On this forum, other persons who match with your condition will also appear with a pseudonym. There you can exchange experiences and information, and if you feel confident, exchange your personal data such as telephone number or email address for a more direct discussion. Why use a pseudonym

This is to protect your privacy. Individual data protection is protected by European and National laws.

Is it useful to establish contact with a person who speaks a different language to mine? In many cases, we hope you will find a match with a person living in your country or speaking the same language, however if this is not the case an automated translators service will provide you with a rough translation of what you intend to express, or of the response of your interlocutor. This system already operates, and it offers the possibility to learn about clinical trials that are run in other countries than yours, or to benefit from tips and support from other families and patients, or to learn about centres of expertise that exist in other countries for your disease.

For the administrators of European Help lines

As an operator of an existing Help line, or if your organisation is planning to create a dedicated Help line for rare diseases, you may want to contact us to create or develop your service.

The network can assist you in:

  1. Defining your mission, preparing the service, evaluating your needs, developing an action plan.
  2. Identifying information sources.
  3. Training your operators, whether paid or volunteers

The network can also help you in:

  1. Evaluating the quality of the service you are providing (self evaluation forms)
  2. Installing a software and a server, the “Rapsody Online Services”, developed by the Rapsody project that will offer you:
       * A form to record information related to any call you receive
       * A link to available resources already sign posted by other respondents in the network
       * Access to the classification of rare diseases developed by Orphanet/ World Health Organisation. (You will be asked to sign a convention with Orphanet to use this classification of 7 000 rare diseases with their code (Orphacode).

For example any document that was used in order to help the caller. will then be recorded, this will allow other Help lines to search a particular topic and to see that a Help line has already found a resource on that particular subject that could be relevant.

All data recorded by the respondent will be stored on the local server. At regular intervals the statistics will be uploaded to a European database and pooled together in order to represent what the rare disease Help lines activity signifies at European level.

This will quantify the overall activity by European Rare Disease Help lines, and help the network to increase its visibility and to increase awareness on the services.

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