Rapsody Services - Rare Diseases - RAPSODY introduction FAQ

The goal of the Rare Disease Solidarity project is (Acronym : RAPSODY)to respond to the needs of european Rare Disease patients by improving the quality of care, information and social services for them and to make proposals to optimise care for rare diseases.

- 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.

- 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.

- What information does Rapsody offer ?

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

- How to ensure the quality 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.

- Can I talk to an opeartor 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.

- Fighting isolation, 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 this useful to etablish 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.

- How to join the network ?

To become a member of the network you can:

Go to the Rapsody Online Services website and submit your contact details. (Any Help line which offers services to European Rare Disease patients can in theory become a member of the network).
As a preliminary step you will be included in our listing. You will be given a login that will give you access to the various resources that have been pooled together amongst the participants (training available, good practice documents, how to go about setting up a new line).
As a secondary step you will be invited to use the tools that have been created. These tools have been developed so as to be easily adapted for European Help line administrators of all nationalities.

- What are the conditions to becoming a member ?

The conditions to becoming a member of the network are:

To demonstrate your operations are conducted in full respect of national legislation on data privacy protection (you may need a lawyer to help you verifying this aspect)
To adopt the classification of rare diseases developed by Orphanet / WHO (see above)
To share information on your Help line activity
To fund the participation of one representative to an annual network meeting

We strongly encourage Help lines that do not already operate with an information system to use the web based database developed by Rapsody, the Rapsody Online Services.