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As a patient advocacy organization supporting individuals and families affected by DRESS Syndrome, we must always consider the patient perspective. In everything we do, their needs, concerns, priorities, and hopes guide our work.

To this goal, our Patient and Family Advisory Panel is an integral community of DRESS Syndrome patients and loved ones with firsthand experience of this life-threatening condition. We consider this community as experts on DRESS Syndrome, due to their first-hand experience.

Patients are their own best advocates. And patient groups are more than voices — they’re essential for making therapeutic advances. Through their experiences, they can drive change and expedite research. As such, they have unique insights that can help inform the decisions we make, the services we provide, and the connections we create.

More specifically, the Panel helps us achieve our goals to:

  • Raise awareness and knowledge of DRESS Syndrome

  • Provide information and education to patients and their families

  • Educate the medical community about DRESS

  • Offer insight for social support and networking opportunities for families

  • Promote DRESS–focused research

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We're currently seeking individuals to join our Panel!

By becoming a member, you join a caring, proactive group of DRESS Syndrome patients and loved ones who wish to use their experience to strengthen patient advocacy.

 

Your membership means that you:

  • Help guide our direction as a Foundation to ensure we consider the patient's perspective

  • Provide feedback on any new programs or services we offer

  • Support our strategic planning process

  • Be available to other patients who may need support through their illness


Who are we seeking for our panel?
 

We are currently seeking individuals and loved ones who have experienced DRESS Syndrome. They also have a passion to help others and make educational headway on this unusual disease. Our goal is to have a diverse panel of patients with varying backgrounds.

You are a good candidate if you:

  • Have recovered from DRESS Syndrome or

  • Are past your acute (severe) stage and experiencing long-term complications or

  • Are a family member who has cared for a DRESS patient who is past their acute stage and/or has recovered


Being past your initial reaction stage is important because you’ll have gained perspective on navigating your illness.

 

How long will you serve on our Patient and Family Advisory?

Serving on the Patient and Family Advisory is entirely voluntary. You may stay on until you no longer desire or can do so. If you wish to leave, simply let us know, and your term will complete.

What will you contribute as a panel member?

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Once you’re a panel member, you’ll engage with us to do the following:

  • Be willing, when available, to weigh-in on our services and share any ideas you may have on how we can better serve our community

  • Participate as a Patient Voice in DRESS–related medical conferences, meetings, and other events (if you wish)

  • Be available for periodic virtual group meetings

  • Share your DRESS story (if you wish) with our patient and medical communities to foster understanding of the patient perspective

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Serving as an International Representative
The patients and loved ones we support live all over the world. We want to ensure that we have international representation to make sure we’re meeting the needs of your specific community. If you’re interested to serve as an International Patient Representative for your country or region, please be sure to share with us!

You are a trusted voice and can be an agent of change helping the patient and medical communities better understand this complex disease.

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