WASHINGTON, Feb. 27, 2014 /PRNewswire/ -- Caregiver Action Network (CAN) announces the launch of www.RareCaregivers.org, a comprehensive online guide that addresses the needs of family caregivers of loved ones with rare diseases.
"As a caregiver of a loved one with a rare disease, you face exceptional, overwhelming challenges," said John Schall, CEO of the Caregiver Action Network. "That's why we developed this website to provide free practical help and advice," Schall said.
An estimated 350 million people worldwide suffer from rare diseases – including 30 million in the United States and another 30 million in Europe. Launch of www.RareCaregivers.org coincides with the 7th Annual World Rare Disease Day on Friday, February 28, 2014.
www.RareCaregivers.org features information helpful to the caregiver such as:
- Caregiving Information You Can Use Now
- Take Care of Yourself
- Complex Emotions
- Family Matters
- Other Places to Turn for Help
Rare disease caregivers met with CAN in 2013 and expressed a need for a resource specifically dedicated to their role as a caregiver, in addition to the disease-specific resources they already utilized. CAN worked with an international task force of rare disease caregivers while developing www.RareCaregivers.org.
The Caregiver Action Network invites rare disease patient organizations around the world to link to www.RareCaregivers.org. This new website focuses only on caregivers, not on patients. CAN encourages caregivers to turn to disease-specific organizations for information on a host of rare diseases, like Pompe's, Tay-Sachs, Huntington Disease or Gaucher's, for example.
To develop and support www.RareCaregivers.org, CAN received funding from Genzyme, a leading biotechnology company whose mission is to develop and deliver transformative therapies for patients with unmet medical needs.
The Caregiver Action Network (www.CaregiverAction.org) is the leading family caregiver organization in the US working to improve the quality of life for the than 90 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age. CAN serves a broad spectrum of family caregivers ranging from the parents of children with special needs, to the families and friends of wounded soldiers; from a young couple dealing with a diagnosis of MS, to adult children caring for parents with Alzheimer's disease. CAN is a non-profit organization providing education, peer support, and resources to family caregivers free of charge.
SOURCE Caregiver Action Network