Addressing the Needs of Family Caregivers of Loved Ones with Rare Diseases

May 31, 2014
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caregiver stress

More relief for caregivers of those with rare diseases is now available.

caregiver stress

More relief for caregivers of those with rare diseases is now available.

The Caregiver Action Network (CAN) has announced 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 can feel overwhelmed and hardly know where to start.  That’s not surprising. Caregivers in the rare disease community face exceptional challenges,” said John Schall, CEO of the Caregiver Action Network.  “That’s why we launched this website to provide free practical help and advice.”

An estimated 350 million people worldwide suffer from rare diseases – including 30 million in the United States and another 30 million in Europe. The launch of www.RareCaregivers.org coincided with the 7th Annual World Rare Disease Day on February 28, 2014.  World Rare Disease Day 2014, whose theme was “Join Together for Better Care,” raises awareness for rare diseases and improving access to treatments and medical representation for individuals with rare and genetic diseases and their families.

The website is a guide for family caregivers of loved ones with rare diseases and features information helpful to the caregiver (known around the world as carer, cuidador, soignant, betreuer, and other phrases, depending on the country) such as:

  • Caregiving Information You Can Use Now
  • Take Care of Yourself
  • Complex Emotions
  • Family Matters
  • Other Places to Turn for Help

CAN’s new “Caring for Rare Disease Caregivers” website was supported with funding from Genzyme, a leading biotechnology company whose mission is to develop and deliver transformative therapies for patients with unmet medical needs.

“This new website will be an exceptional resource to help families in their rare disease caregiving journey,” said Toni Mathieson, Executive Director, Niemann-Pick Disease Group (UK) and Board Member of the International Niemann-Pick Disease Alliance. “There are millions of rare disease caregivers around the world who need caregiving information and support networks,” she added.

Caregiver Action Network created the new “Caring for Rare Disease Caregivers” website to address the needs expressed by actual rare disease caregivers.  In a meeting with CAN in 2013, rare disease caregivers reported unmet needs related to social support, self-care and connections across diagnoses; and expressed a clear consensus opinion that they would be well served by a resource they could access dedicated to their needs as a caregiver, in addition to the disease specific resources they already utilized. CAN then worked with a special, international task force of rare disease caregivers in developing the new “Caring for Rare Disease Caregivers” website.

The Caregiver Action Network invites rare disease patient organizations around the world to link to the www.RareCaregivers.org website.  As John Schall, CEO of CAN, explained, “The new website is focused only on caregivers, not on patients.  Disease-specific organizations are the real experts for information on a host of rare diseases like Pompe’s, Tay-Sachs, Huntington Disease or Gaucher’s, for example. We welcome partnerships with rare disease organizations and patient groups so that we can help them by providing resources solely directed towards the caregiver of a loved one with a rare disease.”

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