Comment from Anonymous

This is a wonderful idea. As a member of the public, I fully support the idea of bringing lay-men and scientific minds together to workshop the shared challenges of specific rare diseases. Unfortunately, because specific rare disease affect only a small percentage of the population, there is not enough thought or research given to these sorts of ailments. There is so much uncertainty in this population due to the limited amount of "sample size" (for lack of a better term) for studies/research and because of limited funding for diseases that affect such a small percentage of the larger community. Bringing people together to speak on the challenges, and hopefully brainstorm through them, is a great idea that brings those who are usually left to the background in suffering and discomfort to the forefront of the metaphorical room. It would be beneficial for these workshops to focus on specific challenges, especially challenges around equity. Patients from underrepresented groups tend to face more challenges when it comes to clinical trial participation, treatment access, and basic diagnosis. The RISE Workshops should not be the end of the road for initiatives such as this. It is important to keep this focus on the challenges to rare diseases sharp and focused in order to provide better care for those most in desparate need.