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Jul. 6, 2015

TOPIC: Uncategorized

Member Spotlight: CdLS Foundation

Posted by Lisa Sencen

The Cornelia de Lange Syndrome Foundation (CDLSF) is a non-profit, family health organization. Established in 1981, the CdLS Foundation exists to ensure early and accurate diagnosis of the syndrome, and help people with CdLS and others with similar characteristics make informed decisions throughout their lifetime. To learn more about Cornelia de Lange Syndrome and CDLSF, please visit

1.) What does it mean to you personally to be a patient organization serving the rare community?

For our staff, serving the rare community is more than a 9-5 job, but rather a calling and a passion. When we see first-hand how much families need this kind of organization in their lives, how could we not be drawn to do as much as we can to support them? We join in their excitement when their child meets a new milestone, and our hearts break alongside theirs at the loss of a child. We are truly honored to be able to help families nationwide and to be granted a glimpse into their lives each day.

2.) What do you find your patient community values most from your organization?

We’ve heard from many families that they value having someone to talk to. Whether it’s through our support-lines here in the office, or having us connect them with other families who live nearby, they express a deep desire to connect with others and just talk about the anxieties they may face, or even talking about the smaller aspects of having a child with a disability.

3.) What are some of the challenges your organization has faced?

 One of the biggest challenges we face is fundraising and gaining support from new donors. As a fairly small group within the U.S., we recognize that families struggle to provide for their own families, let alone making an extra donation to us as an organization. We’re always looking for ways to expand our outreach to those outside of the “family network” we have so that the burden of support doesn’t lie so heavily on them.

4.) Whats been your most successful awareness campaign and/or fundraising event?

National CdLS Awareness Day has continued to grow each year, and this year in particular we saw tremendous growth of online awareness taking place. Hundreds of people spread awareness on their Facebook accounts, Twitter, and Instagram. Families are our great resource for raising awareness across the country, and they have the best, compelling stories to tell. Their knowledge is such a heat asset when it comes to awareness of a rare disorder, and we saw great efforts across the country this year especially.


302 West Main Street, #100
Avon, CT 6001





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NORD is excited to be putting the spotlight on CdLS Foundation this week! Stay tuned for posts about CdLS Foundation on NORD social media throughout the week. If you would like your NORD Member Organization to be in the spotlight for the week, email your NORD Membership Manager for more information.