For Caregivers & Carepartners

This page is mainly intended to help patients and/or their caregivers and/or carepartners.

That being said, the information provided on this website is designed to support, not replace, the relationship that exists between a patient/site visitor and their physician.

When you are told that a relative or a dear friend has a frightening diagnosis, it can be an awful shock.

When it is also a very rare condition they face added problems such as difficulties of diagnosis, lack of clear information and variations in advice and treatment.

Of course, it’s very likely that with such a rare disorder they might never meet another person with the same condition. Hence the need for a support network like ours, and the chance of meeting each other at the conferences we organize.

Your Role as a Caregiver/Carepartner

Every caregiving experience is unique. Your support is crucial in reinforcing hope, as today, there are treatment options for Degos disease.

Supporting Diagnosis and Research

If you suspect Degos disease, support the pursuit of an accurate diagnosis. Once diagnosed, aim to get the patient involved in the NIH research protocol for the best possible care.

Help pursue referrals to NIH

Review The Steps

Pursuing Advocacy and Treatment

As a caregiver, it’s important you advocate for the patient. Ensure they are under the care of someone experienced in treating Degos disease, as the condition can worsen rapidly without treatment. Your role involves:

Advocacy: Helping physicians provide the best care, staying informed about new treatments, and navigating the challenges of medication approval.
Finding the Right Physicians: Seek out doctors who can diagnose, treat, and assist with medication access. If the patient is too sick to travel to the NIH, the treating physician should contact a member of the Degos Disease Foundation Medical Leadership Team for guidance

Thank you for your help

As Degos disease is an extremely rare disease, we welcome input from those affected by it. We also welcome donations to help with the running of our Degos Disease Foundation website and to assist the research into the disease.