Let’s Get Connected: Bringing Together Those Living with Psoriasis, from Local Communities to the Global Arena

October 26, 2019

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aking tangible advancements for psoriasis patients is a team effort. One crucial aspect of this effort is advocacy – groups that represent the patient voice and experience, and ensure they are being heard at each step of the drug development process and beyond. The International Federation of Psoriasis Associations (IFPA), a non-profit organization uniting national and regional psoriasis associations from around the globe, does just that.

Ahead of World Psoriasis Day on October 29, Patrik Vuorio, executive director of IFPA and Elisa Martini, advocacy and policy program officer of IFPA, discussed how IFPA is working with Bristol-Myers Squibb in the shared mission to keep patients at the center of the work being done in psoriatic diseases.

Leading the Coalition

IFPA leads a number of initiatives to raise awareness of psoriatic diseases, including advocating for improved living conditions and access to therapies, organizing and mobilizing stakeholders and collaborating with organizations across its industry, academic, and medical partners to enact change. One such initiative, the Global Psoriasis Coalition, was created in response to the World Health Organization’s 2016 report on psoriasis. The Coalition serves as a vehicle to promote joint dialogue and varying perspectives, while including a variety of resources in order to ensure effective positioning of psoriasis in the global policy arena, bridging the global and regional stages of advocacy and policy.  

“The Coalition functions as a library of knowledge on psoriasis, as well as a way to show the impact that psoriasis has on the lives of individuals,” said Martini. “It serves as an educational resource for not only those who live with the disease, but those who want to learn more about it and access information to better understand it.”

Bristol-Myers Squibb plays an integral role in supporting the Coalition, creating a bridge to research and development in the psoriasis disease space.

“As the Coalition continues to evolve in its mission, Bristol-Myers Squibb’s work for patients brings a voice to the table that can help shape dialogues and actions, as it works to develop novel therapies to treat conditions like psoriasis,” said Vuorio.

The Global Psoriasis Coalition’s Psoriasis Index

One tangible output of the Global Psoriasis Coalition is the Psoriasis Readiness Index tool – a way to measure how health systems are managing psoriasis.

“The Psoriasis Readiness Index is a powerful tool that serves as an advocacy conduit for members of those identified countries as they advocate for improving the management of psoriasis. However, it also serves to refocus attention on the disease and drive further awareness and understanding,” said Martini.

Using qualitative and quantitative research from health systems of target countries, the Index helps identify the best practices as well as strengths and weaknesses of the management of psoriasis, in order to provide insight to countries that are also improving their commitment to psoriasis.

“By connecting and uniting all individuals touched by psoriatic diseases – from those living with a condition, to advocacy organizations, to the medical community and beyond – we can continue to drive forward research and ensure progress for patients in the treatment of psoriasis,” said Shawn Keogan, global advocacy, Bristol-Myers Squibb. “We look forward to continuing our work with IFPA to make meaningful advancements for patients around the world.”

Bristol-Myers Squibb is proud to partner with IFPA to help patients in need. Learn more about IFPA here.

Strengthening Connections within the Psoriasis Community:

IFPA forges connections across four key pillars to strengthen the foundation of the psoriasis community:

  1. Connecting to Comorbidities: The complexity of psoriasis and its comorbidities is often misunderstood by those who are not directly impacted by the disease. By highlighting the various comorbidities that might be at play for patients with psoriasis, broader audiences can have a better understanding of the disease and its impact.
  2. Connecting Patients to the Science: In order to better understand their disease, patients have a desire to learn not only about the scientific implications of psoriasis, but to also share their input and experience when it comes to the development of clinical trials.
  3. Connecting Communities: It’s important for people living with psoriasis and those impacted by the disease to find commonality and support from each other. 
  4. Connecting for Unity and Results: Patient associations, professional associations and other non-profit organizations are working together in order to bridge unity and bring forward actionable results for others.

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