FARA is fortunate to join many umbrella organizations in advocating for the rare disease community. Together, we bring the patient's voice, concerns and needs to a wider audience as an American FA patient changes from one in 5000 FA patients to one in 30 million people with a rare disease, or 10% of the US population.
Several of these organizations offer opportunities to patients for education, advocacy training, networking and exposure. Together, your voice adds to the conversation that shapes our laws, healthcare, clinical trials and much more. Some of this is possible through events such as a workshop or summit, but travel is not required to be an advocate. Throughout the year, you can gain information on current issues that affect the rare disease community and learn what each of us can do to help raise awareness and support through newsletters and webinars. Sometimes what is needed is as simple as sending an email or calling a legislative office.
Here is a list of a few of those organizations. Signing up for one or more of their emails will empower you with information and provide you options on how you could get involved.
NORD (National Organization for Rare Diseases)
Advocating for over 280 patient organizations, NORD has been a leader in the rare disease community for 35 years. It's Rare Action Network educates and connects patients on local, state and national issues. NORD runs webinars and workshops throughout the country to help education and train advocates. You can get updates by signing up here.
Everylife Foundation for Rare Diseases
The Everylife Foundation is dedicated to accelerating biotech innovation for rare disease treatments through science-driven public policy. They just finished RARE on the Road, a series of educational workshops held in Houston, TX, Salt Lake City, UT and Nashville, TN. Locations for 2019 Rare on the Road have not been announced yet but stay tuned in case one is in your neighborhood!
It's Rare Disease Legislative Advocates (RDLA) program is it's advocacy arm and will keep you abreast of current issues through monthly emails and monthly webinars if you sign up here.
RDLA is currently gearing up to sponsor Rare Disease week on Feb 24-27, 2019. It is a four-day program that harnesses the energy and passion of the rare disease community to successfully effect legislative change. If you are interested in participating, check out their travel stipend application by December 14, 2018.
Global Genes
Global Genes, which started as a grassroots movement in 2009, now works with over 500 global organizations. Their mission includes building awareness and providing education and resources to help advocates become activists for their disease.
This year they partnered with the Everylife Foundation to sponsor Rare on the Road mentioned above as well as just holding an impressive Patient Advocacy Summit in Irvine, CA on Oct 3-4. Keep an eye out for its 2019 programming!
