RUDY Patients Forum – The Voice of the RUDY participants

The patient forum is made up of RUDY participant volunteers who act as a link between RUDY study and its participants, their families and carers. The members of the forum include parents of children with a rare disease as well as adults with a rare disease.

RUDY and the patient forum work together to:

• Suggest and discuss any new ideas for content within RUDY. The patient forum helps to form ideas for the areas of interest RUDY should be providing its participants.
• RUDY patient forum members have represented RUDY at charity group meetings and have acted as ambassadors within local communities.
• RUDY patient forum members are invited to join online meetings every 8-12 weeks where we discuss any changes to RUDY and ask for feedback on various topics.
• The members are also invited to comment on prospective research topics and data requests from other research groups.
• Patient forum members can also contribute to research questions to help forge the areas of research RUDY carries out.
• The patient forum makes a real difference to our participants to ensure RUDY continues to be developed by the participants for the participants
• RUDY patient forum members are also invited to sit on all the committees within RUDY, looking at all aspects of the study

Why get involved?

RUDY Patients Forum help to make a real difference to the RUDY participant experience and represent the participants voice.

You can be as involved as you would like to be and you are not expected to be available at all times – perhaps you prefer to be involved in the group meetings but not the reading of research proposals, it is completely up to you as to which aspects of RUDY you are involved in. One of the biggest advantages of the wide range of members of the patient forum is that at each meeting we have a different mix of people and experiences.

How to get involved

If you would like to become a member of our Patients Forum please contact rudy@ndorms.ox.ac.uk

Buddy System

We do have some long standing members of the patient forum group who would be happy to have a phone call or an online meeting with you to explain what it is like to be a member of the patient forum. We call this the buddy system and this initial contact with another forum member can be offered to new members of the forum if it is felt to be of benefit. It is not compulsory and some people feel it isn’t necessary. If you feel this would be something you would like to do then we can arrange this.

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Here are some testimonials from members of the patient forum on what the RUDY study means to them:

I joined the RUDY study because I felt people with rare diseases are under represented, particularly when they become Adults. It has been really exciting to watch RUDY grow and feel this research and information we provide may help to improve lives in the future

I joined RUDY because I wanted to become more involved with helping to get a cure for MM. And when I saw that there was also a patient forum, I thought this was a more pro-active way of helping.

What I get out of it is being able to help make decisions on the future of RUDY and through this helping to set priorities for research - and from a patient perspective. What is important to patients is not always important to researchers! I can't work at the moment due to my cancer treatment, so this helps fill the gap - I am part of a team, need to use my brain, gives me something positive to contribute to.

I wanted to help with Rudy as I feel strongly about volunteering to help anyone with Myeloma to try to find a cure. Since starting I have been proud of the fact that I am also involved in helping other rare and undiagnosed diseases.

I really like the fact that there is somewhere that clients can have all their medical information in one place in case it's needed in the future and that this information will be helpful to other people.

I have found being part of the Rudy study has helped the medics understand some of the emotional and day to day issues that clients go through so will continue to help as much as I can.

I joined Rudy to help gain recognition for my ultra-rare condition in the hope that researchers and health care professionals would become familiar and be able to diagnose the condition.

Rudy enables me to be able to feel valued once again now that I am unable to go out to work. It is good to be part of a team not only developing new research but also helping patients.

Being a member of the Rudy study patient forum allows myself and others greater understanding of the aims of the study. This in turn allows us to act as an interface between researchers and patients by sharing our experiences of being involved with Rudy as patients. In this way we are enabled to become well informed ambassadors within our various rare disease communities for Rudy.

Inspired by one of our RUDY members during a meeting we had, I’m getting out more, exercising more, and the result is that lassitude is largely defeated. But it took someone to share the problem for me to find a solution. Clinicians are so focused on their specialism they fail to manage comorbidities and there is absolutely no one accessible who helps with living. It takes sharing. RUDY contributes by putting us in touch. More would be welcome.