During the summer Abby Gardner, who is affected by WS and a Trustee of WSUK, was given with the opportunity to participate on two medical related panels. Below is her account.
The first panel was at a Bionical Emas company conference. Bionical Emas is a company that aims to combine clinical development, clinical access supply and early access programmes. This means that access to clinical trials will be made easier for patients. During this panel, I was asked to speak about my experience of clinical trials. I have only taken part in one clinical trial, so I spoke about my experience of the TREATWolfram trial, which is currently running.
I was very nervous about presenting in front of an audience of approx. 200 members of staff. Being registered as severely sight impaired, I was worried about walking onto the stage and taking my seat in front of everyone. I partially tripped off the stage, but was able to regain my composure and carry on with the session. I received very positive feedback and a donation to WSUK as a thank you.
The second panel I took part in was at a LifeArc event. LifeArc is a UK medical research charity that aims to support and progress Scientific research. This means that current scientific theory can become trials and eventually treatments for rare diseases.
Once again, I spoke about my experience in the TREATWolfram trial. This was a very different experience and once again I received positive feedback.
Both of these opportunities allowed people to ask questions about living with a rare disease and the clinical trial experience. They also enabled me to talk about the importance of Patient Advocacy.
Patient Advocacy is becoming a key part of clinical trials, meaning patients are now becoming not only more involved, but central to clinical research.
An effort is being made to make clinical trials more accessible to patients.