The IPPF Goes to Washington, DC

Advocates from the IPPF and other rare disease organizations will celebrate Rare Disease Week on Capitol Hill February 27 – March 2.

Join us in Washington, DC, to advocate and raise awareness for more than 7,000 rare diseases. More information about the scheduled Rare Disease Week events is available on the Rare Disease Legislative Advocates (RDLA) website.

If you would like more information, please contact Marc Yale.

Share your story with Congress

Getting involved can be as simple as sharing your story.

Thanks to generous sponsorships from Immune Pharmaceuticals and Kroger Specialty Pharmacy the IPPF will be sending 10 patient-advocates to Washington DC this year to hand deliver as many patient stories as we can collect!

Please submit your story by February 24th to be included.

Together, we raise awareness for all rare diseases!

Rare Disease Week

Rare Disease Week on Capitol Hill brings rare disease community members from across the country together to be educated on federal legislative issues, meet other advocates, and share their unique stories with legislators.

The week of events starts with the Rare Disease Documentary Screening and Cocktail Reception on Monday evening.

On Tuesday, advocates attend RDLA’s Legislative Conference to learn about the legislative process, legislation currently under consideration by Congress, and effective advocacy techniques to build a relationship with Members of Congress and staff. The conference is crafted to educate advocates with little to no political experience and to provide useful updates to those with a history of political action.The aim is to have every advocate leave the Legislative Conference with confidence in their ability to make a difference on Capitol Hill.

On Lobby Day, advocates put what they learned at the Legislative Conference to work. At breakfast, keynote speakers prepare attendees for the day of meetings with Members of Congress and their staff, raising awareness of rare disease and advocate for the legislation most relevant to them. That evening, the EveryLife Foundation hosts the Rare Artist Reception with artists from around the country displaying their work and sharing their experience with rare disease with Members of Congress and staff.

On Thursday, advocates have the opportunity to attend the Rare Disease Congressional Caucus briefing, which will convene policy experts and rare disease stakeholders to educate Congressional staff and the public on issues of importance to the rare disease community.

All events are free for patients, caregivers and other advocates but advance registration is required for each event.

Rare Disease Day

Rare Disease Day is an annual observance held on the last day of February to raise awareness for rare diseases and improve access to treatments and medical representation for individuals with rare diseases and their families.