Caregiver Mentor Profile

Joni Berg

Joni

PH Caregiver since 1998

"My wife has been a PH patient for over 13 years. We have three children. I am very active in the field of helping patients with PH and I am currently serving as the chairperson of PHA Israel. I would love to help other patients or caregivers on the often bumpy road of their journey with PH and hopefully help them appreciate the positive aspects of their situation."

About Joni:

  • Gender: Male
  • Born in 1965
  • Lives in Israel
  • Languages: English, Hebrew

About Joni’s Loved One:

  • Patient’s year of birth: 1966
  • Type of PH: Idiopathic

Joni feels comfortable discussing his experiences with:

  • infused medication
  • oral medication
  • cardiac or pulmonary rehabilitation
  • depression and mental health issues
  • traveling with PH
  • communicating with medical personnel
  • organizing medical records
  • advocacy and awareness-raising work
  • local support groups
  • online communities (PHA email groups, message boards, chats)
  • issues associated with longterm caregiving

Contact Joni: JoniB@PHAPHriends.org

   

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NORD

The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.