Thursday Hart Senate Office (Corrie)

We had an early breakfast and we arrived at the Hart Senate Office on Capitol Hill. In the morning we had a talk from a representative of NORD, the National Organisation for Rare Disease. He came to advocate to us about the importance of NORD and the great work that it does. NORD is doing very important and special work for people with rare diseases. An example is that NORD has created a database of over 1,200 rare diseases where people suffering from those diseases can research them and find out if there are clinical trials running or about to start up that they can get involved in. It also allows them to be able to connect with people suffering from the same disease as well as speak to specialists. They created Rare Disease Day, February 29th, to raise awareness of the work they do and to promote their funding.

members of ther ScotCRN YPG with staff at the Hart Senate Office, Washingotn DC

“The man speaking to us” had had first- hand experience of working with NORD, as his son had died very young at the age of 17 with a rare disease. The issues of health insurance were discussed and how you can quickly reach your maximum when your child has a rare disease and needs a lot of surgery or treatments.

Greg and I were asked to represent ScotCRN-YPAG at a meeting of Pharma companies and patient groups. At this we delivered a presentation on the work that has been done in Scotland through our group and gave examples of the results our work has created. Although not being able to present the slideshow we prepared, the talk went great and everyone we presented to was very impressed with the work that the ScotCRN-YPAG has done.

After this we met a senator at Capitol Hill and I spoke to him about the differences in the health care system in the US compared to the free health care provided in Scotland. In this discussion we found out that he actually admired the healthcare system in Scotland and believed that America would actually be better if it had developed a free health care system too.

Members of ther ScotCRN YPG with staff at the Hart Senate Office, Washingotn DC