In-District Lobby Days
For the past four years, I have joined IPPF patients and others in the rare disease community across the country in advocating to congressional members in my district. The IPPF is joining forces again this year with Rare Disease Legislative Advocates (RDLA) for In-District Lobby Days from August 7, 2017 through September 6, 2017.
Over the past several months, many patients, caregivers, and physicians have contacted the IPPF about their struggle to access life-saving treatments for pemphigus and pemphigoid.
It may be difficult for advocates to travel to Washington DC and speak with their legislators, so the IPPF is partnering with RDLA to coordinate congressional meetings. At first, I was nervous about meeting with my representatives, but it was very easy. Meeting with them during the summer means that they are in congressional recess and they have more time to spend with you to hear your story. It is important to share my disease journey with representatives and senators so they are aware of the significant impact legislation has on patients.
We need Congress to pass laws that will increase funding for rare disease research, improve delays in diagnosis, and make life-saving treatments available and affordable. Over the past several months, many patients, caregivers, and physicians have contacted the IPPF about their struggle to access life-saving treatments for pemphigus and pemphigoid.
Now, more than ever, it is crucial that the IPPF community speaks up about this issue. Please join me this year in advocating during In-District Lobby Days and letting Congress know that no disease is too rare for a cure!
Please go to http://rareadvocates.org/ and register today!