FOR THE COMMUNITY
EveryLife Foundation for Rare Diseases
Below you’ll find some information EveryLife Foundation for Rare Diseases provided about themselves for the myasthenia gravis (MG) community.
When was the EveryLife Foundation for Rare Diseases founded?
Dr. Emil Kakkis founded the EveryLife Foundation for Rare Diseases in 2009. Dr. Kakkis is a renowned geneticist who has dedicated his life to developing novel drug treatments for rare diseases. These treatments have saved the lives of thousands of people.
How many members does the EveryLife Foundation for Rare Diseases have?
We currently have 217 members.
What area does your advocacy organization operate in?
The EveryLife Foundation for Rare Diseases is based in Washington, D.C.
How to get involved
What resources does your advocacy organization provide to its members, and what can a new member expect when they join?
We do not speak for patients. Rather, we provide the training, education, resources and opportunities to make their voices heard. By encouraging our members to be patient advocates and act, we can change public policy and save lives.
How can people in the MG community get in touch with your advocacy organization’s leaders in their area so they can get involved?
Our website is a great resource for advocates who are just starting out. We provide training, education and financial support to people living with rare diseases. Connect with us on Twitter, Facebook, Instagram and YouTube.
Does your advocacy organization include caregivers as members, and, if so, how are they involved?
The EveryLife's Community Congress has approximately 78 members who have identified as caregivers, including the National Alliance for Caregiving. Community Congress is a program that serves as a platform for engagement with rare disease stakeholders and provides critical guidance to the foundation and leadership to the rare disease community.
What are ways that people can contribute to your advocacy organization? Do you have any urgent needs?
People may contribute by participating in one of our action alerts and policy priorities. To learn more about the latest action alerts and policy priorities, visit our website.
Raising awareness for myasthenia gravis
Does the EveryLife Foundation for Rare Diseases host any annual events to raise awareness for myasthenia gravis?
Our scheduled events are posted on the events page of our website. We recently hosted the RareVoice Awards, which celebrates advocates who give rare disease patients a voice on Capitol Hill and in state government. Another big event we host every year is Rare Disease Week on Capitol Hill.
What is the most important message your advocacy organization has for someone living with MG?
For people living with MG and any other rare disease, the EveryLife Foundation for Rare Diseases wants you to know that you are not alone and that every voice matters. By sharing your story, you can make a difference, change public policy and save lives.
Is there a story you’d like to share about a time your advocacy organization helped members of the MG community?
The fight to change policy and help save lives never stops at the EveryLife Foundation for Rare Diseases. We continue to host virtual events like Rare Across America during the pandemic. To date, more than 670 advocates, including members of the MG community, have spoken to their legislative officials and their staff on important rare disease issues.
How have the needs of your advocacy organization and its members changed over time?
Every time we have the opportunity to hear from the community, our needs adapt to their needs. We are always finding ways to understand their wants and act on them.
Is there anything you wish more people knew about your advocacy organization?
It’s important that people understand that we provide support to both experienced advocates and those who are just starting out, including families, friends and caregivers.
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