2023 Member Impact Fund Stories

2023 Member Impact Fund Stories

ADVOCACY

Association of Patients with Allergies, Asthma and Atopic Dermatitis (Bosnia and Herzegovina)

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About

The Association of patients with allergies, asthma and atopic dermatitis is the first and only organization dealing with atopic diseases in Bosnia and Herzegovina but with the regional outreach.

Impact Fund Project

With help from the GlobalSkin Member Impact Fund, the AAA created a successful advocacy campaign to raise awareness on psoriasis and atopic dermatitis. Their hope was originally to provide awareness and educate patients on the importance of acceptance for their mental health as well as to present leading solutions (therapy) and medicines for these diseases. The overarching goal was to help improve the quality of life for people living with dermatological disease, and to help educate health care providers. Within this awareness campaign, the AA organized two meetings, one with patients and doctors, and the second with policy makers and healthcare providers. Since there is a huge gap between institutions, policy makers, and healthcare providers, the hope was to use this opportunity to gather them in order to advocate for better treatment of dermatological patients.

Throughout the year, the AAA also developed two brochures for psoriasis and atopic dermatitis, sent PR articles to the media where they were invited to be interviewed for Voice of America to talk about the situation of patients not having access to biologics.

The Biggest Success of the Project in Our Patient Community

Through the Impact Funded advocacy work, the AAA was able to reach Grantmakers who were willing to pay for the treatment of 10 severe atopic dermatitis patients for a whole year!

Why the Member Impact Fund is Important to our Organization

“Sometimes smaller steps lead to greater momentum if we keep moving forward towards our goals. The Impact Fund helps us to drive change.”

To learn more about this organization, please visit:

Website: https://aaa.ba/

Facebook: https://www.facebook.com/groups/463888860654269

LinkedIn: https://www.linkedin.com/company/85607550/admin/

EVENT PLANNING

Epidermia, Panhellenic Society of Patients with Psoriasis and Psoriatic Arthritis (GREECE)

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About

Epidermia, founded in 2015, and works on behalf of all patients with dermatological issues, advocating with the Ministry of Health for the provision of medicines, better treatments, as well as providing a community for support.  

Impact Fund Project

‘All About Vitiligo’ was a webinar event, hosted virtually on Epidermia’s Facebook page, featuring a presentation and Q&A with the foremost dermatologist in the country on the condition, Dr Electra Nikolaidou. The aims were to provide information to patients about symptoms, diagnosis and treatment and raise public awareness. In addition, Epidermia members spoke about the psycho-social value of being part of an association, as well empowering oneself to get the relevant treatment for their dermatological conditions. Dr. Nikolaidou spoke about symptoms, treatment, and issues related to the management of the condition. The audience asked many questions and she responded to them fully. The central messages conveyed were that vitiligo is not contagious, it may have a small genetic component and it does not increase a patient’s risk of skin cancer.

The Biggest Success of the Project in Our Patient Community

This is the first time that vitiligo has been publicly addressed in Greece via a patients’ association. It is therefore potentially the first time that many patients have had access to information and support. This is a significant impact, augmented by the fact that the guest speaker is the foremost expert in the country. The amount and range of questions (symptoms, diagnosis, treatment, nutrition, etc.) revealed the importance of the webinar in addressing the lack of information for this patient community. 23,249 people were reached, with 78 FB comments, in addition to the large number of questions during the event!

Why the Member Impact Fund is Important to our Organization

“As a small non-profit organization, the Member Impact Fund is important to us, as it allows us to reach patients who have no other sources of help.”

ORGANIZATIONAL DEVELOPMENT

Beautifully Unblemished Vitiligo Support Group (USA)

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About

Serving as Florida’s sole Vitiligo support group, BUVSG’s mission is to increase public awareness of Vitiligo as well as offer support services to patients and their families through education, healthcare, and resources.

Impact Fund Project

With help from the Impact Fund, the BUVSG was able to sponsor a board retreat to develop a strategic plan, as well as provide training on the roles of a board and how to effectively run a board meeting. The primary goal of organizational development for the organization was to foster positive change, enhance employee engagement, and ensure that the BUVSG can meet its current and future challenges and objectives successfully.

At the completion of the project, the organization had the increased ability to measure its progress year-over-year, review key dates, campaigns, events, donor development and stewardship, sustainability, and branding.

The Biggest Success of the Project in Our Patient Community

Through the Impact Fund, the BUVSG was able to hire a consultant that provided fresh perspectives that have equipped us to be even more impactful in our mission to support those with Vitiligo.

COMMS AND MARKETING

Eczema Support Australia

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About

Eczema Support Australia was inspired by a family with twin boys who have severe allergies and eczema. Their vision is for Australians living with eczema to overcome difficulties and thrive in their community, through connection, advocacy and information.

Impact Fund Project

Eczema Support Australia’s Impact Fund project provided funding for their organization’s communications plan, meant to effectively disseminate the findings of the first Australian: "The Burden of Eczema - Evidence for a National Strategy". Their goal was to develop meaningful and effective dialogue with key decision makers, and advocate for proper support to achieve our project objectives. The Impact Fund assisted the organization to develop a digital platform to launch the report and assisted in the engagement of professional services to develop a communications plan to engage key federal decision makers.

The Biggest Success of the Project in Our Patient Community

Gaining full support from the peak body for dermatologists in Australia for our project was because of our ability to initiate the project launch plan, thanks to the Member Impact Fund. As a result, we have a report with a Foreword from the President of The Australasian College of Dermatologists and extensive media and government interest in our report and call for a National Eczema Strategy.

Why the Member Impact Fund Important to our Organization

“This Member Impact Fund was key to setting up additional support for our key project. The outcome of this project may be the most significant focus on our disease area that Australia has ever had.”

2023 IMPACT FUND RECIPIENTS

  1. Albinism Fellowship Australia – Albinism – Australia 
  1. Anti Vitiligo Foundation Rwanda – Vitiligo – Rwanda 
  1. Association of patients with allergies, asthma and atopic dermatitis – Atopic - Bosnia 
  1. Beautifully Unblemished Vitiligo Support Group, Inc – Vitiligo – USA 
  1. Beyond Vitiligo – Vitiligo – South Africa
  1. CMTC – OVM – Nevus – Netherlands
  1. Corbetta – Albinism – DRC
  1. Cross the Goal – Atopic – USA (Puerto Rico)
  1. Cutaneous Lymphoma Foundation – Cutaneous – USA
  1. DEBRA South Africa – EB – South Africa
  1. Društvo Atopijski dermatitis – Atopic – Slovenia
  1. Eczema Association of Australasia Inc – Atopic – Australia
  1. Eczema Society of Kenya – Atopic – Kenya
  1. Eczema Support Australia – Atopic – Australia
  1. FUNDAPSO – Psoriasis – Colombia
  1. Genespoir – Albinism – France
  1. Gorlin Syndrome Alliance – Gorlin Syndrome – USA
  1. Helping Hands Foundation – Atopic/All - Pakistan
  1. Idrosadenite suppurativa – HS – Italy
  1. ITSAN – TSW / ATOPIC – Intl/USA
  1. MEDICAL SERVICES' RESPONDERS IN TANZANIA – Atopic/All - Tanzania
  1. Naevus Global – Nevus – Global/Netherlands
  1. National Association Allergy and Me – Atopic – Serbia
  1. Outer Shell Africa Communications OUTERSAC – All – Nigeria
  1. Panhellenic Association of Patients with Psoriasis and Psoriatic Arthritis, ‘Epidermia’ - Psoriasis – Greece
  1. Promotion of Education Link Organization (PELO) - Albinism – Tanzania
  1. Scarring Alopecia Foundation – Alopecia – USA
  1. Skin Sri Lanka – All – Sri Lanka
  1. The British Allergy Foundation – Atopic – UK
  1. The National Foundation for Ectodermal Dysplasias – ED – USA
  1. Vietnam Psoriasis Association (PSORVIET) - Psoriasis – Vietnam
  1. Vitiligo Support and Awareness foundation Ghana – Vitiligo – Ghana
  1. VITAMIGOS – Vitiligo – Cuba
  1. Xeroderma pigmentosum society – XP – South Africa

  2. IPPF – Pemphigus/Pemphigoid - Intl/USA