Aug. 17, 2015
TOPIC: Featured News
Posted by Lisa Sencen
The Foundation for Ichthyosis & Related Skin Types (FIRST) is a voluntary organization dedicated to helping individuals and families affected by the inherited skin diseases collectively called the ichthyoses. The ichthyoses are a group of rare, inherited disorders characterized by abnormally dry, scaly, thickened skin due to abnormalities in the production of the protein keratin. FIRST provides support, information, education, and advocacy for individuals and families affected by ichthyosis. FIRST supports research into the causes, treatment, and ultimate cure for ichthyosis.
FIRST is gearing up for its 2016 National Family Conference in San Diego, CA! A financial aid fund is available for families to apply for financial assistance to attend FIRST’s next conference which is sure to be an amazing chance to meet other families affected by ichtyosis. Learn more about the financial aid fund here.
1.) What does it mean to you personally to be a patient organization serving the rare community?
I feel honored and fortunate to be part of a patient organization serving individuals and families affected with a very rare skin condition. It is a life-changing experience when these patients realize they are not alone and have the opportunity to meet and form relationships with others that have the same condition. They can seek comfort in knowing that there is a group of knowledgeable physicians who know about their disease, and there are passionate, dedicated medical investigators working to find better treatments and a cure. I am continually inspired by our members, their families, our volunteers and caring doctors who strive to make each day better.
2.) What do you find your patient community values most from your organization?
In a word, support. We support our members emotionally, as well as through education, reliable resources, research opportunities and medical referrals to improve their quality of life. Our year-round support meetings and events are transformational for many of our members. And equally important is the support FIRST provides to the medical community and researchers. Programs like our tele-ichthyosis portal, physician referral, and our competitive research grant program continue to have a critical impact on the future of our patients and their families.
3.) What are some of the challenges your organization has faced?
The fact that ichthyosis and the related skin types are rare diseases, it is not always “top of mind” for dermatologists and allied healthcare professionals to recommend FIRST to their patients. FIRST is often challenged to not only educate patients, but to ensure that their doctors are aware of our organization and have the information they need to provide the best possible care. The internet has somewhat closed that gap, but physician education and awareness still needs to grow. Another challenge is that FIRST is the leading global patient advocacy group and, thus, patients worldwide are contacting us. This can present challenges of language, cultural, and socio-economic barriers. With a well-developed plan for international partnerships and translated materials, we are confident that we will one day, in the not too far off future, successfully address these challenges.
4.) What’s been your most successful awareness campaign and/or fundraising event?
It’s difficult to select only one campaign or fundraising event that has been successful. As a national organization, FIRST is fortunate to have hundreds of affected individuals, their families, and volunteers, host awareness and/or fundraising campaigns across the country and throughout the year. And every one of them is successful! The education of an affected patients’ community makes life so much easier for everyone involved. A specific time of year when many of our members join forces is May, which is Ichthyosis Awareness Month (IAM). During this month, they become more active on social media sharing posts, photos, personal stories, or hosting walk/runs, car washes, dress down days, etc. However, overall, awareness and fundraising happens all the time for FIRST. I am proud to be a part of such a wonderful community.
2616 N Broad Street
Colmar, PA 18915
NORD is happy to be putting the spotlight on FIRST this week. You can look forward to social media posts on our Facebook and Twitter accounts about FIRST throughout the week! Member Organizations to NORD interested in Member Spotlight should contact their regional membership managers at NORD to learn more!