What is Ectodermal Dysplasias Awareness Month?
During the month of February, each year, our community joins together to celebrate Ectodermal Dysplasias Awareness Month in an effort to:
- Increase awareness around the 100+ rare, genetic conditions, that affect our community.
- Advocate for legislation that would change the lives of individuals and families affected by ectodermal dysplasias.
- Advance research to develop new treatments and ideally cures for future generations.
Why give now?
Ensuring Lasting Smiles Act
We are so close to moving forward the Ensuring Lasting Smiles Act (ELSA). Once passed, ELSA would legally ensure that private individual and group health care plans cover medically necessary treatments for anyone with congenital anomalies, including our ectodermal dysplasia family.
However, we are not done yet! And it is more important than ever, that we continue to advocate to our legislators on how important this bill is for our community. This congress’ term ends after the upcoming 2022 elections, meaning all of the hard work put in to educate Congress about the importance of this bill will be lost at the end of the term. We have less than a year to get ELSA passed into law!
XLHED Clinical Trials
Have you heard about the exciting new treatment for X-linked hypohidrotic ectodermal dysplasia (XLHED) that is in clinical trials? This protein treatment is given to babies in utero and has shown positive outcomes in prior trials, including restoring sweat function and lessening other symptoms of XLHED! WOW!
The NFED is dedicated to supporting the sponsors of this trial and making our community aware of the potential this treatment has. We will continue to discuss the treatment with potential trial candidates and ensure potential candidates are aware of the trials (coming to the U.S. this spring/summer)!
You can give in many ways!
Your financial gift will help us move forward our advocacy and research work AND ensure we can continue to be the leading expert on ectodermal dysplasias wordwide. It also ensures we can be the home base for the thousands of families across the globe that turn to us for support every year.
BUT, there are many more ways to get involved and to support our work. Read more about our efforts this month.
Thank you for your support!