The Alport Syndrome Foundation is encouraging patients and caregivers to attend the event in late February and March. It will allow Americans with rare diseases like Alport syndrome to meet with members of the House and Senate. In addition to helping them learn more about the legislative process, they can share their stories with lawmakers.
Rare Disease Week on Capitol Hill 2018 will run from Feb. 25 to March 1, with activities occurring the entire week. The preliminary program is:
Sunday, Feb. 25 – Rare Disease Documentary Screening and Cocktail Reception.
Monday, Feb. 26 – Legislative Conference.
Tuesday, Feb. 27 – Lobby Day Breakfast.
Tuesday, Feb. 27 – Lobby Day.
Wednesday, Feb. 28 – Rare Disease Congressional Caucus Briefing.
Wednesday, Feb. 28 – Rare Artist Reception.
Thursday, March 1 – Rare Disease Day at the National Institutes of Health.
Those attending the Legislative Conference will learn about the law-making process, what health-related legislation Congress is considering, and ways to build a bridge with members of Congress and their staffs.
The conference will provide useful updates to those with political and advocacy experience, but is also open to those without such experience. The idea is to help everyone who attends feel they can make a difference on Capitol Hill.
The breakfast on Tuesday will be the place to hear the event’s first keynote speeches and prepare those who are attending for their Lobby Day meetings with Congress. The aim is to help them apply the knowledge they obtained during the Legislative Conference the day before so they can do the best job of advocating for the legislation most relevant to them.
At the Rare Disease Congressional Caucus briefing on Wednesday, patients, policy experts and others will tell members of Congress and the public know what policies they consider crucial to dealing with rare diseases.
Artists from across the nation with rare diseases will display their work and share their experiences with each other and members of Congress at the Rare Artist Reception later on Wednesday.
To help more rare disease advocates attend, the EveryLife Foundation will offer a limited number of travel stipends, with the amount depending on where a participant is coming from. If you live in Maryland and Virginia, you are eligible for $400. Those living in the rest of the continental U.S. can receive up to $800. The stipend for someone living in Alaska, Hawaii and Puerto Rico is up to $1,000.
Applications for the stipends will be accepted through December 10, 2017. All of the events are free for patients, caregivers and other advocates, but advance registration is required for each event.
A Facebook page has been created to help facilitate arrangements among rare disease community members and others who would like to attend. The 2017 version of the Rare Disease Week on Capitol Hill attracted more than 600 people from across the country.