Last week, Primary Lymphedema was one of 10 rare diseases highlighted at the National Organization of Rare Diseases’ annual gala in Washington, DC!
Each year NORD honors 10 rare disease patients from around the country. Sophia Hanson, daughter of Lymphedema Advocacy Group board member Julie Hanson, was among this year’s Portraits of Courage honorees. You can read more about Sophia on NORD’s blog.
The day following the gala, the Hanson family, along with other board members and advocates, met with congressional offices about the Lymphedema Treatment Act. We now have 82 cosponsors, but still need many more!
If your Rep isn’t a cosponsor yet don’t give up, or settle for a form letter response! Persistence is key and will pay off. Keep writing and calling, and getting as many others as you can to do the same. You’ll finds lots of tips and guidance in our Advocacy Handbook.
And remember that we are happy to provide you with free information cards to help you spread awareness and inspire others to take action. A link to order your cards can be found on the Increasing Awareness page of our website.
Happy Memorial Day and I hope your summer is off to a wonderful start!
Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org
