The 1st World Psoriasis & Psoriatic Arthritis Conference was held in Stockholm in June, organized by The International Federation of Psoriasis Associations (IFPA). IFPA is a nonprofit organization made up of psoriasis associations from around the world. The meeting brought together dermatologists, rheumatologists, scientists, industry representatives and patients with the goal of broadening the global understanding of these diseases.
Highlights of the meeting included presentation of research on quality of life, function and participation, clinical research including treatment and epidemiology, genomics and proteomics, and immunology. At one session, there was a terrific discussion of how dermatologists and rheumatologists could best work together to manage patients who have both skin and joint manifestations of psoriasis.
Patient Advocacy Groups Around the Globe
A striking feature of the meeting was the variation among countries in how patient advocacy was perceived. In the United States, we are blessed with a very strong Psoriasis Foundation, led by patients and advised by dermatologists. The Foundation produces a wealth of patient education materials, a brochure to educate insurers about psoriasis and its treatment, and even a few books to help educate dermatologists about the latest in psoriasis management. The Foundation helps reduce patients’ sense of isolation, helps empower dermatologists to work toward a cure and even helps reduce the barriers to access to treatment.
At the other extreme, though, some patient advocates report that in their countries the physicians aren’t too keen on the idea of strong patient advocacy groups, concerned that patients should learn about their disease only from their doctors. It almost makes me laugh (were it not so sad) as I couldn’t possibly tell a patient all he or she wants and needs to know about psoriasis — all the treatments, all the science, all the things to do in different social situations — if it weren’t for the support of our Psoriasis Foundation.
I learned that Japan represents a country in transition. Just a few years ago Japanese dermatologists wouldn’t have wanted patients to know anything other than what their doctors told them. Now they are supportive of a psoriasis patient advocacy group. It may seem surprising that educating patients broadly about their condition and its treatment has been such a big shift in Japanese
medical practice.
Educating and Empowering Patients
It’s not hard to see how some physicians might be nervous about the downsides to having patients involved in self-education and in taking responsibility for their own health. We can reassure those doctors, though, having experienced all the positive ways that our Psoriasis Foundation helps patients and dermatologists. The key may be the strong relationship our Psoriasis Foundation has with dermatologists, involving them in the development and review of patient education materials and other advocacy programs. The Foundation offers us professional membership and a host of other opportunities in which to participate if you are interested!
The 1st World Psoriasis & Psoriatic Arthritis Conference was held in Stockholm in June, organized by The International Federation of Psoriasis Associations (IFPA). IFPA is a nonprofit organization made up of psoriasis associations from around the world. The meeting brought together dermatologists, rheumatologists, scientists, industry representatives and patients with the goal of broadening the global understanding of these diseases.
Highlights of the meeting included presentation of research on quality of life, function and participation, clinical research including treatment and epidemiology, genomics and proteomics, and immunology. At one session, there was a terrific discussion of how dermatologists and rheumatologists could best work together to manage patients who have both skin and joint manifestations of psoriasis.
Patient Advocacy Groups Around the Globe
A striking feature of the meeting was the variation among countries in how patient advocacy was perceived. In the United States, we are blessed with a very strong Psoriasis Foundation, led by patients and advised by dermatologists. The Foundation produces a wealth of patient education materials, a brochure to educate insurers about psoriasis and its treatment, and even a few books to help educate dermatologists about the latest in psoriasis management. The Foundation helps reduce patients’ sense of isolation, helps empower dermatologists to work toward a cure and even helps reduce the barriers to access to treatment.
At the other extreme, though, some patient advocates report that in their countries the physicians aren’t too keen on the idea of strong patient advocacy groups, concerned that patients should learn about their disease only from their doctors. It almost makes me laugh (were it not so sad) as I couldn’t possibly tell a patient all he or she wants and needs to know about psoriasis — all the treatments, all the science, all the things to do in different social situations — if it weren’t for the support of our Psoriasis Foundation.
I learned that Japan represents a country in transition. Just a few years ago Japanese dermatologists wouldn’t have wanted patients to know anything other than what their doctors told them. Now they are supportive of a psoriasis patient advocacy group. It may seem surprising that educating patients broadly about their condition and its treatment has been such a big shift in Japanese
medical practice.
Educating and Empowering Patients
It’s not hard to see how some physicians might be nervous about the downsides to having patients involved in self-education and in taking responsibility for their own health. We can reassure those doctors, though, having experienced all the positive ways that our Psoriasis Foundation helps patients and dermatologists. The key may be the strong relationship our Psoriasis Foundation has with dermatologists, involving them in the development and review of patient education materials and other advocacy programs. The Foundation offers us professional membership and a host of other opportunities in which to participate if you are interested!
The 1st World Psoriasis & Psoriatic Arthritis Conference was held in Stockholm in June, organized by The International Federation of Psoriasis Associations (IFPA). IFPA is a nonprofit organization made up of psoriasis associations from around the world. The meeting brought together dermatologists, rheumatologists, scientists, industry representatives and patients with the goal of broadening the global understanding of these diseases.
Highlights of the meeting included presentation of research on quality of life, function and participation, clinical research including treatment and epidemiology, genomics and proteomics, and immunology. At one session, there was a terrific discussion of how dermatologists and rheumatologists could best work together to manage patients who have both skin and joint manifestations of psoriasis.
Patient Advocacy Groups Around the Globe
A striking feature of the meeting was the variation among countries in how patient advocacy was perceived. In the United States, we are blessed with a very strong Psoriasis Foundation, led by patients and advised by dermatologists. The Foundation produces a wealth of patient education materials, a brochure to educate insurers about psoriasis and its treatment, and even a few books to help educate dermatologists about the latest in psoriasis management. The Foundation helps reduce patients’ sense of isolation, helps empower dermatologists to work toward a cure and even helps reduce the barriers to access to treatment.
At the other extreme, though, some patient advocates report that in their countries the physicians aren’t too keen on the idea of strong patient advocacy groups, concerned that patients should learn about their disease only from their doctors. It almost makes me laugh (were it not so sad) as I couldn’t possibly tell a patient all he or she wants and needs to know about psoriasis — all the treatments, all the science, all the things to do in different social situations — if it weren’t for the support of our Psoriasis Foundation.
I learned that Japan represents a country in transition. Just a few years ago Japanese dermatologists wouldn’t have wanted patients to know anything other than what their doctors told them. Now they are supportive of a psoriasis patient advocacy group. It may seem surprising that educating patients broadly about their condition and its treatment has been such a big shift in Japanese
medical practice.
Educating and Empowering Patients
It’s not hard to see how some physicians might be nervous about the downsides to having patients involved in self-education and in taking responsibility for their own health. We can reassure those doctors, though, having experienced all the positive ways that our Psoriasis Foundation helps patients and dermatologists. The key may be the strong relationship our Psoriasis Foundation has with dermatologists, involving them in the development and review of patient education materials and other advocacy programs. The Foundation offers us professional membership and a host of other opportunities in which to participate if you are interested!
