Honoring Caregivers on the Eve of Rare Disease Day

Alan Gilstrap | February 27, 2014

Rare Disease Day continues to inspire and connect a vast global community dedicated to improving the lives of people affected by rare diseases.  In our view, this year’s theme of “Join Together for Better Care” couldn’t be more timely and appropriate. Having spent the last year and a half talking with rare disease caregivers to understand their needs, we came away from these discussions with a profound belief that more needed to be done to support this dedicated and inspiring group of people.  

In honor of this year’s International Rare Disease Day theme, we are pleased to announce the launch of a new global, online forum for rare disease caregivers created by the Caregiver Action Network (CAN).  The purpose of CAN’s new website is to provide support and resources to a critical element in the lives of all rare disease patients -- the role of the caregiver.

CAN is launchingCaring for Rare Disease Caregiversin honor of Rare Disease Day and the site will continue to evolve and improve over the coming year based on user feedback and input. In this initial version of the site, several key resources are translated into Spanish, French and German. The website contains important resources for caregivers with information and tools to help caregivers care for themselves, reenergize, and deal with complex emotions and challenging family situations. Perhaps more importantly, it is a tool that will enable caregivers to connect with one another across the globe via an online forum.

We know that the rare disease caregiver community in particular faces exceptional hurdles in terms of the lack of available support networks, broad disease awareness and resources. Having partnered with CAN over the past several months on this important initiative, we have benefitted greatly from their expertise and knowledge in support of the rare disease community. It is our hope that with CAN's new resource dedicated to a critical component in any rare disease patient’s life – the caregiver -- we are one important step closer towards helping caregivers feel more empowered, informed and supported. 

 

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