Search for an Article

 Search

To search by keyword(s), simply type the words in the search box and click Search.

To search for a specific phrase, enter the phrase within quotation marks and click Search.

To search for predetermined topics/tags or by type of resource, scroll down until you see the category and tags sections on the left navigation bar of this page. Then click on the category or topic of interest to reveal the corresponding videos.

Tag: Advocacy

Lobbying for LAM

0 Comments   |   
Like 0 Likes

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

Tags: Advocacy Capitol Hill
Categories: Events

Rare Disease Advocates at Work!

0 Comments   |   
Like 0 Likes

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

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

Advocacy Update: NIH Research Funding

0 Comments   |   
Like 1 Likes

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

Tags: Advocacy NIH Funding
Categories: Educational Resources

Sign In to Participate
Or register to become a member