About '1000 faces of RMS'
This website aims to help families and patients with an RMS diagnosis to find readily available links to appropriate support resources, but also to give you information relating to current areas of research into this disease and clinical trials. An important purpose of this site is to enable you to help that research community with information.
Why ‘1000 faces’ ? Well we just want to give a voice to RMS sufferers, and show their faces. It brings home to people who this disease actually touches. But why 1000? Well we may never get to 1000 faces, but at least we can try. The more people that join us and share their stories and support the researchers, the more progress we will make in the fight against this disease.
One of the key inhibitors to progress in the fight against RMS is the rarity of the cancer. Progress in the study of cancers such as breast and lung cancer have been helped greatly by the ready availability of large amounts of case data and DNA samples.
For RMS, this is not the case. So, how can we help?
- Join us here by registering to access our intranet. You can then share your relevant information, story, photographs and any fundraising events you may be associated with. Over time you will be able to find out more about RMS and what research is currently ongoing. Please do join us and help us make this a useful focus for all of us who are touched by RMS, or work to fight RMS
- Tell us what you want out of this site. What should we change? What should we add? What is useful and what is not? What additional links should we add? Just let us know.
- Please get involved and share some information (anonymously) about your case of RMS. This information can help research teams to better understand the disease, it’s characteristics, behaviours and responses to different treatment regimes
- Consider participating in the ‘International Sarcoma Kindred Study’ (ISKS). This is easy to do and could help us to make real progress. Find out more here.