ADVOCACY
Our hope is that this advocacy page will assist in bringing our collective voices to the table, to make great change in our country and all over the world! Click on the links below to find information on various bills that are in process as well as other opportunities to advocate.
The HPS Network supports the efforts to establish a comprehensive law protecting the rights, health, education, employment and dignity of people with Albinism and Hermansky-Pudlak Syndrome (HPS) in Puerto Rico.
Follow one of links below to read the letter to Senator Jamie Barlucea Rodriguez regarding P. del S. 1386 – Request to Preserve and Incorporate the Strong Protections Established by P. Del S. 247/Law 109-2022.
Advocacy Opportunities:
What’s Your Story?
The EveryLife Foundation for Rare Diseases launched What's Your Story?, an online rare disease story bank for advocates like you to share your experiences on a wide-range of issues impacting the rare disease community. What's Your Story? presents a series of questions...
The STAT Act
The Speeding Therapy Access Today, or STAT Act, H.R. 1730/S. 670, is a bipartisan bill that was created with the input of the rare disease community aimed at improving the development of and access to therapies for the rare disease community. The centerpiece of the...
For those who currently live in Pennsylvania
PA patients need the right medicine at the right time! Step therapy, often called "fail first," is a process that requires patients to take one or more alternative medications chosen by their insurer before permitting patients to access the...
Medical Device Nonvisual Accessibility Act introduced in the U.S. House of Representatives
U.S House of Representative Jan Schakowsky (D) IL introduced H.R. 4853, the Medical Device Nonvisual Accessibility Act to the U.S. Congress. The bill calls upon the Food and Drug Administration to promulgate non-visual accessibility standards for Class II and Class...