Our work frequently involves collaboration with other organizations, which includes long-standing relationships with several different rare disease groups.
Primary lymphedema is a rare disease affecting approximately 1 in 100,000 individuals. Lymphedema is also a common comorbidity that is frequently associated with over 40 rare diseases, as shown in the infographic below.
One of the ongoing ways in which we support primary lymphedema patients is through the creation of Rare Disease Advisory Councils in each state. An example of this effort is this letter to the New York State legislature.
In addition, we strive to ensure that accurate and up-to-date information about primary lymphedema is available through rare disease organizations. Last year we worked with the National Organization for Rare Disorders (NORD) to update their Primary Lymphedema page.
We are eternally grateful for the support we received from the rare disease community as we worked to pass the Lymphedema Treatment Act. The Rare Disease Legislative Advocates (RDLA) group was an ardent supporter of the bill, and we have been honored to be repeatedly recognized by the EveryLife Foundation through their RareVoice Awards.
If you are a primary lymphedema patient, I encourage you to get involved with any of the wonderful organizations named above. All of these groups have ongoing programs throughout the year, and in particular during the month of February, as we lead up to Rare Disease Day on February 28th.
One of my sons was born with primary lymphedema. I understand firsthand the unique challenges this brings, especially the struggle that many patients face receiving a diagnosis.
And although secondary lymphedema is by no means rare, these patients often face the same challenges as those who have a rare disease, due to insufficient awareness about lymphedema in general.
We are all in this together!
Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaAdvocacyGroup.org
