Recognition & Resources for Rare Disease Caregivers

Regan Sherman | November 18, 2015
Recognition & Resources for Rare Disease Caregivers

Several years ago, our patient advocacy team convened a group of rare disease caregivers - the parents, partners, siblings and loved ones of people with rare diseases – to learn more about their daily challenges and needs. In doing this, we quickly realized that we could do more to support this dedicated and inspiring group of people, who so often set aside their own needs to care for their loved ones. So in 2014,we partnered with the Caregiver Action Network (CAN) to launch, a website designedto provide support and resources specifically for rare disease caregivers.

RareCaregivers.orgrecognizes the valuable role that caregivers play in the lives of rare disease patients and offers information and tools addressing a variety of complex issues, from the practical (How can I safely lift my loved one?) to the more abstract (‘How can we maintain intimacy in our relationship?’). Articles are written with the understanding that challenges faced by rare disease caregivers are often very different from caregivers of people with more common disorders and that the experience can be quite isolating without support from people who ‘get it.’

Since its February 2014 launch, RareCaregivers.orghas been frequented by more than 17,500 visitors and has been translated from English into Spanish, German, French and Portuguese – helping it to become a more global resource for rare caregivers. Perhaps most importantly, the site’s online forumalso gives caregivers the opportunity to connect with one another across the globe.

Here in the U.S., President Obama recently recognized November 2015 as National Family Caregivers Month. During November or anytime of year, we hope you will find a way to recognize the caregivers in your community and consider sharing RareCaregivers.orgas a helpful resource. If you have ideas for information or topics to expand the site’s content, we would love to hear from you.

To have your organization added to the list of available resourceson the site, please email info@caregiveraction.orgwith the name of your organization, your website and the name of a staff contact. 

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