Member Organization: Fundacion Padece
Member since: August 2023
Country: Chile
Summary:
- Fundación Padece is the first foundation in the country that accompanies patients, diagnosed and seeking a diagnosis, of immune-mediated chronic dermatological diseases.
Get to know more about this organization below!
Thank you to Francisco Tapia Besnier, President of Fundacion Padece for sharing his stories, insights and the work of the organization. 
What would you like me to know about your organization?
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Fundación Padece is the first non-profit organization in Chile, which strives to raise awareness and provide support not only to patients suffering from chronic immune-mediated dermatological diseases but also to all those who are seeking a diagnosis of skin disease.
Fundación Padece's team is composed of people very close to the world of skin diseases, but it is also made up of highly trained professionals committed to working on our mission and getting closer to our vision every day. Our team includes two HCP, a writer, an organizational coach and an audiovisual director.
What do you consider to be your organization’s biggest accomplishment and success?
- One of our organization's most significant accomplishments to date, and being only 2 years old, is our official inclusion in the National Registry of Patient Organizations in Chile. This pivotal achievement underscores our dedication to the cause and positions us to actively engage in shaping public health policies. This recognition underscores our commitment to advancing the well-being of individuals with chronic immune-mediated dermatological diseases and empowers us to advocate effectively on their behalf. Through this accomplishment, we have established a solid foundation to contribute meaningfully to the betterment of healthcare frameworks and the lives of those we serve.
Also, being able to join recognized international organizations in the field of dermatology and atopy such as GlobalSkin, has given us the importance that allows us to approach the authorities in a more serious and reliable way, an endeavor we take seriously and as the most important responsibility with our patients.
What are the biggest challenges that your organization's patients face?
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One of the most prominent challenges confronting our patient community is the prevailing misconception that skin diseases solely concern cosmetic or aesthetic aspects. This misconception places a substantial psychological burden on our patients, impacting their self-esteem and producing feelings of isolation and misunderstanding. In Chile, a distinct challenge arises from the lack of access to appropriate treatments for chronic skin conditions, as these diseases are not currently integrated into public health policies by the relevant health authorities.
This disparity in recognition and access further compounds the difficulties faced by our patient community. Our ongoing efforts are aimed at raising awareness, rectifying misperceptions, and advocating for equitable healthcare policies that address the multifaceted needs of individuals affected by chronic immune-mediated dermatological conditions such as Hidradenitis Suppurativa, Atopic Dermatitis, Psoriasis, Chronic Urticaria and Vitiligo.
What is the best piece of advice you have for skin patient organization leaders?
- In our strategic approach, it's imperative to channel all efforts into two pivotal dimensions: the visible actions and campaigns and the unseen work. The patient community necessitates concentrated efforts directed at rendering them attention, understanding, visibility, and unwavering support. Yet, concurrently, we must remain vigilant about the latent work of engaging with authorities and building trust with them, a behind-the-scenes endeavor that bears considerable significance. The importance of aligning with individuals of high integrity, exceptional professional knowledge, profound social consciousness, and an earnest drive to work for essential improvements in the lives of individuals enduring skin diseases or pursuing accurate diagnoses cannot be overstated. By exerting influence on public policies and diligently advocating for our cause, we contribute to broader systemic change.
Our commitment extends beyond public opinion; it encompasses the corridors of power where decisions are made. To this end, we endeavor to amplify our message, underscoring the vital truth that "Skin can also get sick." This concise yet compelling concept encapsulates our mission to eradicate misconceptions and instigate a transformative shift in how dermatological conditions are perceived. By strategically balancing the seen and unseen facets of our work, we not only uplift the lives of those we serve but also pave the way for enduring societal change and equitable healthcare for all.
Learn more about this organization by visiting their website: https://padece.cl/
Follow them on Facebook: https://www.facebook.com/padece.chile
Follow them on Instagram: https://www.instagram.com/padece.chile/
Check out their YouTube channel: https://www.youtube.com/channel/UCIUCzNK0tShoAOfV4Eg0aJQ/featured