I am a representative of our local Students for Rare chapter here at UW SMPH. Students for Rare is affiliated with the NORD organization (National Organization for Rare Disorders). Our mission is to bring awareness, advocacy, funding and policy for those living with, or are family members of people with diseases. Part of this mission includes increasing visibility and awareness for current and future health care providers about the various rare diseases that exist today. To facilitate this, we have launched a newsletter that features one Rare Disease, and an interview with someone directly affected by it. We hope that this newsletter will help future healthcare providers be a bit more knowledgeable for their future Rare Disease Patients and give them perspective and tools to help better treat these patients and families. This month’s Rare Disease is Pompe, and features the addition of it to the Newborn Screening Panel in Wisconsin!
I have included a link to a Google form for future interest in being interviewed for our newsletter below. If you know someone who is affected by a Rare Disease, please share this link with them.
This post was authored by Lily Allison on 05/12/2021.