Articles for tag Advocacy

Lobbying for LAM

Posted on November 21, 2017   |   

We often hear about the power of lobbyists/advocates and their ability to take on a specific cause with the goal of influencing change. But when The LAM Foundation decided to gather a group of LAM patients, family and friends in Washington, D.C. to advocate for LAM awareness and the need for continued funding of the NIH, it presented an opportunity almost as rare as the disease itself.

Read More

Topics: Advocacy Capitol Hill        Categories: Events
Global Genes Summit with Katie.JPG

Rare Disease Advocates at Work!

Posted on September 29, 2017   |   

Global Genes Summit

Development Manager, Katie Jensen recently traveled to the Global Genes Rare Patient Advocacy Summit to learn from and collaborate with other rare disease leaders. Read about what she learned, who she met, and why she’s even more inspired for the Patient Benefit Conference & LAMposium LA!

Read More

Topics: Advocacy Global Genes LAMposium LA Patient Benefit Patient Benefit Conference Rare Diesases TS Alliance        Categories: Educational Resources

Advocacy Update: NIH Research Funding

Posted on July 31, 2017   |   

Since our time on Capitol Hill in late June, there has been much happening around the 2018 congressional budget. Below is the latest regarding NIH funding and information about how you can continue to help ensure this important funding is sustained in the 2018 budget.

Read More

Topics: Advocacy NIH Funding        Categories: Educational Resources
Sign In to Participate
Or register to become a member