The following is a blog post from Rob Whan, Childhood Cancer Advocate:
“This was my second consecutive year at the Rare Disease Legislative Advocacy Days and the experience did not disappoint me. RDLA has the same challenges with rare populations as we do with childhood cancer, some of them being FDA reform, low or nonexistent funding and lack of drug development. The atmosphere at RDLA is very comfortable for the childhood cancer advocate. We are welcome as part of the team and it seems that they recognize that our challenges are much in line with theirs.
Statistically, the childhood cancer community fits within the scope of rare disease with the guideline being less than 200,000 diagnoses per year and includes 7000 other diseases. There is a lot that this group does well but there are a few in particular that the childhood cancer community can embrace and aspire to. The 2 things that I wish to highlight from the experience are education and access.
The schedule surrounding the RDLA week was a busy one. At some times choices were offered of topics at different venues to fit your interest. We attended as many as we could and the education that was offered through the panel discussions and presentations were unprecedented in my 6 years of advocacy experience.”