News

Vote for Caroline!

DSC_0431.jpg

Voting for the Rare Artist contest* is now open, and runs

through 10/17. 

 

The link to vote is rareartist.awardsplatform.com 

 

PHACE Syndrome Community member, Caroline is a top twenty finalist out of 250 submissions.  The top 10 in public voting are granted a stipend to attend a reception on Capitol Hill during Rare Disease Week.

 

Read more about Caroline...

 

Hi, my name is Caroline. I am 10. I was born with a vascular birthmark called a hemangioma. Lots of kids have these and they go away. But mine was more complicated. It is part of a rare disorder called PHACES syndrome. It took many years for me to get this diagnosis. My mom took me to many doctors and asked lots of questions. A new diagnosis is like a scary creature waiting beneath the water. My sculpture represents this. The octopus is the color of vascular birthmarks and its eight tentacles are holding treasures, some of them are good and some are bad. A beautiful cone-shaped shell shows that the pain you go through may hold something lovely. Clams make pearls from sand that irritates the clam. The clam and pearl represent something beautiful coming from our struggles. The octopus is holding a treasure chest that contains coins. Some of them have smiley faces on them which represent the kind and accepting friends I’ve made. The pink pills are the ones I take every day to keep my birthmark healthy and help the headaches I get. Some things the creature brings aren’t fun, but we have to persevere.

Caroline Reddy.jpeg

* Rare Artist Program was established in 2010 to exhibit the unique gifts of individuals impacted by rare disease to tell their story through art. Now in year 12, the Rare Artist Annual Contest is focused on providing a national platform for artists to advocate through visual artwork and powerful artist statements. Rare Artist finalists participate in individualized artist-to-advocate coaching to strengthen their advocacy voice. Rare Artist awardees are presented with checks and invited to speak during Rare Disease Week on Capitol Hill in Washington, D.C. Their artwork is showcased throughout the year at various patient and biopharmaceutical conferences, displayed at the Rare Hub, social media, and website posts.

nord-logo-transparent-2019.png

 

Rare Caregiver Respite Program

 

This first-of-its-kind assistance program is designed for caregivers of a child or adult diagnosed with a rare disorder. NORD understands that caring for a loved one is a generous gift that demands significant amounts of time, attention, patience and dedication.

The Respite Program provides financial assistance to enable the caregiver a break to attend a conference, event or simply have an afternoon or evening away from caregiving. Financial assistance will be granted up to $800 annually for those who qualify.

What care may be covered?

  • Registered Nurse (RN)

  • Licensed Practical Nurse (LPN)

  • Certified Nursing Assistant (CNA)

  • Home Health Aide (HHA)

  • Non-professional caregiver

Who is eligible?

The caregiver must be a US citizen or permanent resident of the United States for at least six months with evidence of residency, and be willing to undergo a financial evaluation of need to determine if they fall within the program’s financial eligibility guidelines. Additionally, the patient for whom care is being provided must have a confirmed rare disease diagnosis.

How do you apply?

Awards are granted on a first come, first served basis to eligible individuals. There is no fee to apply. Contact a Patient Services Representative at 203.616.4328 or email CaregiverRespite@rarediseases.org.