Global Genes collaborates with organizations, patients and experts to create resources and tools to help inform rare disease patients, connect patients with one another, build community and share best practices for raising awareness, seeking research and treatments and become stronger advocates for themselves and their disease community.
A nonprofit founded in 2009 with a mission to Eliminate the Challenges of Rare Disease, Global Genes shares these resources with the community and hosts meetings and conferences to connect the community, share best practices and help organizations build capacity.
Following is a sampling of the resources Global Genes has available for patients. Organizations can also participate in the Foundation Alliance comprising nonprofit organizations and support groups serving rare patients. More than 330 organizations strong, there is no cost to participate.
Covering topics including Informed Consent, How to Start a Nonprofit, Leveraging a Rare Disease Center of Excellence and Becoming an Empowered Patients, RARE Tookits can be read online or downloaded as PDFs.
Here are several titles that may be helpful and informative for rare disease patients and caregivers:
Building a Care Notebook
From Molecules to Medicine: How Are New Drugs & Therapies Developed?
From Molecules to Medicine: Clinical Research
From Molecules to Medicine: How Patients Can Share Their Voices Throughout the Drug Development Process
Keys to Help Patients Ensure a Successful Surgery
Tap into experts in the medical, scientific and rare disease community to ask questions and learn more about topics including patient registries, grant writing, gene therapy, and navigating insurance by listening to archived RARE Webinars. You can also see upcoming topic for 2016 and there is no cost to join in.
RAREDaily Patient Stories
There are more than 7,000 rare diseases identified by the National Institutes of Health and LEMS is one of them. Rare is indeed everywhere and there are 30 million people in the U.S. who are living with a rare disease. That’s 1 in 10! Worldwide, that number soars to 350 million. A rare disease is one that affects fewer than 200,000 people in the U.S., and some, like LEMS are sometimes referred to as ultra-rare because the incidence is very small.
The last day of February each year is World Rare Disease Day and this is a time for the entire community to raise awareness for their disease, sound public policy to advance drug development and approval and share stories of perseverance and strength.
Visit the RAREDaily Blog to read about the journeys of rare patients and caregivers, consider sharing your story there or on this website to help others understand LEMS and how it affects your daily life. Read these stories and know that you are not alone!
RARE Patient Advocacy Summit
A signature event held annually in Southern California, the Summit brings patients, advocates, scientists, researchers, government industry, physicians and other experts in rare disease together for two days of informationally programming and connection across multiple rare conditions.
Sessions for the Summit are live streamed and recorded and several briefs summarizing discussion were produced as well. From inspirational stories like Bonner Paddock to details regarding drug development and groundbreaking sciences to sharing your personal journey to raise awareness, this unique events fosters community and is unmatched for catalyzing best practices and connecting patients and advocates. You can watch the sessions from 2015 online.
There are more ways to connect with rare and take advantage of the resources throughout the community. Visit globalgenes.org to see what’s new!