EB and the Rare Disease Community

Every year, people around the world participate in Rare Disease Day. Taking place on the last day of February, this declared international event was established to raise awareness among the general public of the prevalence of a group of diseases classified as “rare diseases.”

 

 

 

 

 

 

 

 

Rare diseases may be classified differently from country to country but in the U.S., a rare disease is any disease impacting fewer than 200,000 Americans at any given time, according to the Rare Disease organization website. (In Europe, that classification is used when it affects fewer than 1 in 2,000.) Epidermolysis bullosa is among the list of rare diseases recognized as part of this global day.

 

Rare Disease Day also is an excellent opportunity for the rare disease community to remind health professionals and researchers, as well as public servants and other decision makers about this community’s needs. With greater media exposure featuring events and campaigns being coordinated, those holding economic and legislative power are introduced to the rare disease community’s daily challenges from lack of research funding and treatment support to a need for better education across the general medical community about rare diseases.

 

Hundreds of patient organizations take part in local and national campaigns as part of Rare Disease Day, launched back in 2008 by EURORDIS. What started as only a European event quickly expanded into a global partnership when the U.S. began participating the next year and has since drawn the attention of over 80 countries world-wide and recognizes over 6,000 rare diseases covering a broad spectrum of disorders and symptoms. Every year, Rare Disease Day has a theme. For 2017 that theme is Research and its slogan: with research, possibilities are limitless.

 

What can you do in your own community to raise awareness for EB and other rare diseases this February 28? Events across the globe will be listed on the Rare Disease Day website. Should you decide to hold one in your community, be sure to share your event details so it can be added. For more information about this global event recognizing rare diseases, visit rarediseaseday.org.

EB and the Rare Disease Community

Every year, people around the world participate in Rare Disease Day. Taking place on the last day of February, this declared international event was established to raise awareness among the general public of the prevalence of a group of diseases classified as “rare diseases.”

 

 

 

 

 

 

 

 

Rare diseases may be classified differently from country to country but in the U.S., a rare disease is any disease impacting fewer than 200,000 Americans at any given time, according to the Rare Disease organization website. (In Europe, that classification is used when it affects fewer than 1 in 2,000.) Epidermolysis bullosa is among the list of rare diseases recognized as part of this global day.

 

Rare Disease Day also is an excellent opportunity for the rare disease community to remind health professionals and researchers, as well as public servants and other decision makers about this community’s needs. With greater media exposure featuring events and campaigns being coordinated, those holding economic and legislative power are introduced to the rare disease community’s daily challenges from lack of research funding and treatment support to a need for better education across the general medical community about rare diseases.

 

Hundreds of patient organizations take part in local and national campaigns as part of Rare Disease Day, launched back in 2008 by EURORDIS. What started as only a European event quickly expanded into a global partnership when the U.S. began participating the next year and has since drawn the attention of over 80 countries world-wide and recognizes over 6,000 rare diseases covering a broad spectrum of disorders and symptoms. Every year, Rare Disease Day has a theme. For 2017 that theme is Research and its slogan: with research, possibilities are limitless.

 

What can you do in your own community to raise awareness for EB and other rare diseases this February 28? Events across the globe will be listed on the Rare Disease Day website. Should you decide to hold one in your community, be sure to share your event details so it can be added. For more information about this global event recognizing rare diseases, visit rarediseaseday.org.

EB and the Rare Disease Community

Every year, people around the world participate in Rare Disease Day. Taking place on the last day of February, this declared international event was established to raise awareness among the general public of the prevalence of a group of diseases classified as “rare diseases.”

 

 

 

 

 

 

 

 

Rare diseases may be classified differently from country to country but in the U.S., a rare disease is any disease impacting fewer than 200,000 Americans at any given time, according to the Rare Disease organization website. (In Europe, that classification is used when it affects fewer than 1 in 2,000.) Epidermolysis bullosa is among the list of rare diseases recognized as part of this global day.

 

Rare Disease Day also is an excellent opportunity for the rare disease community to remind health professionals and researchers, as well as public servants and other decision makers about this community’s needs. With greater media exposure featuring events and campaigns being coordinated, those holding economic and legislative power are introduced to the rare disease community’s daily challenges from lack of research funding and treatment support to a need for better education across the general medical community about rare diseases.

 

Hundreds of patient organizations take part in local and national campaigns as part of Rare Disease Day, launched back in 2008 by EURORDIS. What started as only a European event quickly expanded into a global partnership when the U.S. began participating the next year and has since drawn the attention of over 80 countries world-wide and recognizes over 6,000 rare diseases covering a broad spectrum of disorders and symptoms. Every year, Rare Disease Day has a theme. For 2017 that theme is Research and its slogan: with research, possibilities are limitless.

 

What can you do in your own community to raise awareness for EB and other rare diseases this February 28? Events across the globe will be listed on the Rare Disease Day website. Should you decide to hold one in your community, be sure to share your event details so it can be added. For more information about this global event recognizing rare diseases, visit rarediseaseday.org.

A Year of Highlights

As all of us wrap up projects and prepare to bring this year to a close, it can be helpful to look back. We can use the occasion to celebrate favorite memories and victories, reflect on losses and the lessons we took away from them and look ahead to a new year and all that it may promise.

 

 

This has been a year marked by milestones and often some big surprises – in the world of technology, science, entertainment, even sports and politics. We had some big moments for the EB community this year. In February, Rare Diseases Day, an international day for bringing greater awareness to rare diseases and with which EB organizations around the world gets involved, had its biggest day ever. New countries took part and more organizations were involved than ever before, and any time greater attention is paid to rare diseases afflicting families among us, this sheds more light on epidermolysis bullosa, too. It was a great victory. It will be wonderful to see what new attention can be garnered in just a few months when the international day of events and campaigns launch again.

 

Specific to the EB community, 2016 marked the return of debra of America’s conference renamed the Debra Care Conference, and there was great turnout! Once again, the event featured many terrific guest speakers and opportunities for EB families to learn, share and interact. Debra also had another successful showing at its annual benefit in October which took place just before the start of 2016 EB Awareness Week. It’s great to see more families taking the opportunity to launch their own awareness campaigns and fundraising events during this time.

 

In our conversations at work and play and online in our social media circles, many of us have remarked how 2016 has been a rough year in terms of loss. We lost so many of our childhood icons and favorite entertainers this year. In the EB community, when we experience a loss, it is deeply personal for any of us who have experienced that ourselves as well as for those who have been intricately involved in EB research, fundraising and caregiving. To our EB families who have been personally touched by loss at home this year, our network of support offers its heartfelt condolences as you move forward into this new year. We know how difficult it will be for you, and we will continue to be there for you every step of the way and encourage you to stay connected to the EB community and as involved as ever, continuing to champion the cause for better treatments, more research and greater support for our families. I know it is a lot to ask, but we as a community are stronger because of every one of us who brings their dedication and commitment to the cause. All of us need each other in this community and that couldn’t be more critical than it is right now.

 

None of us can predict what the new year will hold but I look forward to more opportunities to interact with the families and individuals who make up the EB community. I wish you all a beautiful holiday season and a very happy new year.

Facing a Rare Disease

February 28 marks Rare Disease Day. For many families facing a rare disease, such as epidermolysis bullosa, it can be as taxing physically and emotionally on caregivers as it is on those diagnosed. Rare Disease Day is an international day of awareness established to educate those in the medical field, those in media, and those who create and enforce public policy that can directly impact these families.

As with previous years, Rare Disease Day 2015 will be comprised of campaigns across the globe intent on reaching hundreds of thousands of people and generating media buzz to be capitalized on by bloggers, tweeters, and interactive Facebook communities like ours in this era of social media and grassroots campaigning.

Although Rare Disease Day started in Europe in 2008 by EURORDIS and the Council of National Alliances, it has grown into a collaborative international effort worldwide connecting health professionals, legislators, researchers, and those in industries serving rare disease communities such as the EB community. Last year, a new record-high 84 countries participated in the awareness day.

For many families facing a rare disease, much of the battle is locating support resources, and accurate, timely health information. Some helpful sites focused primarily on providing relevant information about thousands of rare disease, such as EB, include:

For more information about Rare Disease Day or to see what related events may be taking place near where you live, visit www.rarediseaseday.org/. If you have been planning your own event to reach area media on the designated date, make certain to post it at the Rare Disease Day site so others can come out to support your campaign.

EB & Rare Disease Day 2014

This month marks Rare Disease Day, an annual day which observes the prevalence of rare diseases and their impact on the people living with them. It was started six years ago by EURORDIS and the Council of National Alliances, and its recognition has grown beyond being a European and become a world occasion with more than 1,000 events held since its launch.

 

The focus behind this one day is in line with what EB patients, families and their advocates set out to do every day – educate people; inspire others to become involved in advocacy, fundraising and research; and instill a better understanding of the kinds of challenges and needs facing the rare disease community.

 

Rare Disease Day has also been embraced by those in highly influential roles to garner more attention for the topic, including politicians and entertainers. Last year, over 70 countries from around the globe took part in what became the largest Rare Disease Day ever. On its own website, the coordinators of the event state their ultimate goal is for the World Health Organization to recognize the last day of February each year as one of its official days to help build international awareness of rare diseases.

 

Here in the EB community, it can be a perfect opportunity for families impacted by EB to speak up. Families could take the occasion to contact their elected representatives about any upcoming or current bills that could impact insurance coverage or funding that might benefit those afflicted with rare diseases.

 

So what other things could you do on a smaller scale to promote Rare Disease Day in your own community? Share information about the international event with your child’s school to explore opportunities to promote it there. Contact local newspapers and television channels. Reach out to any civic or social groups in the area to encourage them to host their own awareness event. Let your company’s HR department know about the annual event and inquire about any opportunities to promote there. Take to your social media channels like Twitter, Facebook, Google+ and LinkedIn and spread the word!

 

To read up about Rare Disease Day 2014, be sure to visit the official website at www.rarediseaseday.org.

Words from the Community

The members of our EB Resource Facebook community are always offering valuable insight into the lives of those personally facing epidermolysis bullosa or caring for someone who is. Recently, we listened in to hear what members are talking about most and are sharing some of the highlights from the community, in case you missed them.

A lot of information gets communicated every day on Facebook and it’s very easy for helpful suggestions or supporting words to slip by without your knowledge. We want to encourage you to stop by our Facebook page on a regular basis and let your voice be heard within the community on those subjects, popping by with a question or commenting about whatever you feel most passionate.

** Please note that comments and recommendations are offered by individual members of the EB Resource Facebook community and are not necessarily recommended or endorsed by EB Resource. Individuals should always consult a physician before making any changes to their wound care program or other care regimens.

  • We always like to pose questions to our community members to get their perspective on a variety of topics. In February, we asked EB Bloggers what personal benefits they’ve gained by being a regular blogger. Derra Nicole Sabo shared that for her, the benefits are two-fold: “Being able to not only help others, but to connect with other EBers.” If you’re an EB blogger, how would you answer that question? It’s not too late to share your thoughts here. We appreciate what EB bloggers do to encourage interaction among the EB community and spread the word outside of our immediate circle of those directly impacted. By being a loud, steady voice online that keeps conversation about EB flowing, you provide an invaluable service that can indirectly support us all.
     
  • Earlier this year, we featured a two-part Q&A with Jennifer Gorzelany, a consultant to Shire (formerly Lotus Tissue Repair) who answered questions about the EBCare Registry. In late January, one member of the community, Sue Altinkeser, commented that there may be confusion among community members about who should actually take part in registering their family’s data: “People are thinking if they are not dystrophic then it’s nothing to do with them…it may be easier to re-word the registry so all are comfortable in adding their data.” In response to the concern she expressed, we reached out to Lotus and tried to clarify for members what the group’s expressed mission is. EB Resource commented: “The goal of the EBCare Patient Registry is to help all individuals with EB. It is important that the registry collects information from people with all forms of EB, so that as much data about EB is available to qualified researchers as possible. Lotus Tissue Repair is currently working on a treatment for DEB. In the future, however, Lotus Tissue Repair and other companies or researchers may use the information in the registry to study other forms of EB, hopefully leading to improvements in care and the development of new treatments. Every EB patient can help with this effort by joining!”
     
  • Some members have found Facebook to be a helpful site to reach out for information or share news about an upcoming campaign or event. Rochi Orbegoso Pea introduced herself and daughter Raquel in November 2012 and their plans to launch an EB awareness campaign at her daughter’s school. Rochi was seeking a speaker at the time for an upcoming event, and we offered to send information on some prospective speakers in her area. Aaron Mavro let members know about a short film competition and his video entry focused on a talented young painter named Kate who has EB and serves as an ambassador for DebRA. Aaron shared the link so members could watch online and vote. Are there any upcoming events, campaigns or efforts you can share with the community and to which members can lend their support and encouragement in some way?
     
  • Members of our community let their voices be heard in other ways on our Facebook page by letting us know what stories touch them most. We are always fascinated to see which stories receive the most “likes.” For example, some of you were pleased to learn about a southern Indiana high school who found a way to turn a much-anticipated conference game into an opportunity to educate audience members about EB. Others of you were inspired to “like” a story about 11-year-old Molly Gibbons whose fearlessness and boisterous personality are bigger than her petite frame. We wanted to make sure that we gave everyone advance notice of Rare Disease Day, held February 28, by sending out a reminder two weeks earlier in an update. Several of you indicated that you appreciated the early notice with a “like.” And when we featured part one of a special virtual conversation with EB advocate Jamie Silver of Jackson Gabriel Silver Foundation, you not only told us you liked it: you shared it with your other Facebook friends and we always love to see that!

We love hearing from you…however you choose to speak up in the EB Resource community. So join in the conversation and let your voice be heard, because we welcome it!

Living with EB

Families living with epidermolysis bullosa may feel sometimes like they are always explaining – explaining why a loved one must eat or not eat certain things; explaining why their skin looks as it does; or explaining why particular toys or seating works better than others in a classroom or play setting to protect their child from injury. It can be tiring and emotionally draining, not just taking all of the precautions themselves, but the constant state of explaining. But families do it because these precautions can truly be life-saving.

We are thankful that there are some resources that have become available over recent years to help families do this one especially tough job, educating others about their family member’s EB. We wanted to mention these again for anyone who may not be familiar with their availability and as a reminder to families who may not have referenced them lately but who did find some usefulness in the past. If you have any other helpful resources or links to suggest to our community members that have been particularly helpful to you in explaining EB to neighbors, school staff and students or even other family members, please share them here in the comments section or on our Facebook page.

  • DebRA’s EB Classroom Video
    The DVD “What Is Epidermolysis Bullosa?" can be especially helpful in breaking down what living with EB is like for families and how students, teachers and other school personnel can support a family’s efforts to keep the student with EB as healthy and safe as possible from the moment he or she arrives in the classroom every day. To order this free DVD from DebRA of America, click here.
     
  • National Institutes of Health (NIH) Q&A about Epidermolysis Bullosa
    A helpful list of some of the most commonly asked questions about EB and their answers are available from the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) at the NIH site. Click here to check it out and consider adding a bookmark so that the next time a friend or acquaintance inquires, you have a handy link to send.
     
  • Dr. Alfred Lane’s Discussion of EB Research and Treatment
    This is a simple 4-year-old video uploaded to YouTube that features the dermatology department chair and EB researcher from Lucile Packard Children’s Hospital at Stanford University, but it does such a good job of breaking down a complex disease and what scientists are hoping to uncover in their clinical research. Click here to see it for yourself and consider forwarding to others who could use the information.
     
  • Garrett: The Boy Beneath the Bandages
    It is no surprise to anyone watching it that this short film was the winner of the 2010 Rare Disease Day Video Contest. Photographer Andre Hermann mixes images with poignant music, audio and film footage of a day in the life of young Garrett and his family as they cope with the pain and challenges of living with EB. Click here to view part one. (The remainder of it, part two, can be viewed by clicking here.) If ever there were a way to “show” someone else life with EB, this may be the fastest, most compelling way to do so. What are your own thoughts on the video?
     
  • EB Public Service Announcement
    Previously, we posted at our blog this public service announcement video, which has also aired in various parts of the country, in an effort to educate people about EB and what it means for the individuals and families it impacts.
     
  • EB Resource
    We hope that you’ll consider our blog and Facebook community helpful tools that you can also introduce to family and friends as a way of explaining more about EB and what kinds of issues our community members face on a daily basis. In fact, one of our most popular blogs was a special one we did last summer, “100 Links for EB Families,” which featured 100 different EB-related links worth sharing. As you might expect, we learned afterward that we had not even scratched the surface and have since found several more helpful resources, but this blog could be a good starting point in trying to familiarize a distant family member or a friend about epidermolysis bullosa. So consider emailing the the link!

Rare Disease Day 2012

It’s official. Tomorrow is Rare Disease Day 2012. Last year, we discussed the origins of this special awareness-raising event, recognizing hundreds of organizations from over 40 countries around the world. Its mission: to unite these groups and the patients and families they support, who are impacted by a wide range of rare diseases, and collectively bring attention to rare diseases and the need for greater education and continued research.

This year, a number of activities will be held across the globe as part of this annual event. We wanted to highlight a few of the events taking place here in the U.S. over the next few days that may be of interest to EB patients and their families.

For a complete list of all international activities, visit the official site for Rare Disease Day 2012. To get more information about any of the specific U.S. activities or learn how you can get involved in your own communities to launch or join grassroots activities, click here to visit the official Rare Disease Day U.S. website.

  • One Longhorn Steakburger employee in Tucson, AZ, has organized Alex’s All-Stars, a dinner special and fundraiser being held at her workplace on February 29 in honor of Rare Disease Day
     
  • Richard Warren Middle School holds its Leap for Rare Diseases, a jump-rope-a-thon to raise research funds for rare diseases on February 29 in Leavenworth, KS.
     
  • The Heritage Train Station of Norman Performing Arts Studio serves as the backdrop of a special Rare Disease Day Awareness Rally being held February 29 in Norman, OK. The event will include presentations and speakers about various rare diseases, as well as fun, educational activities for the kids, too.
     
  • The National Institutes of Health hosts RDD@NIH, an all-day event at its offices in Bethesda, MD, on February 29 with a variety of informative activities being planned. Click here for more registration info.
     

The next day (March 1), the FDA hosts FDA Rare Disease Patient Advocacy Day for rare disease patient advocates, being held at the FDA’s White Oaks facility in Silver Spring, MD. Click here for more registration info.

 

A Closer Look at Rare Disease Day

Today marks an international event first established in Europe in 2008 by the European Rare Diseases Organization (EURORDIS) and now embraced by countries all over the world, including the U.S. and the National Organization for Rare Disorders (NORD) as Rare Disease Day, observed each year on the last day of February. Its significance to EB families is enormous as it collectively unites a number of groups – patients and their families, patient advocacy organizations, the medical community, scientific community and educators and more – to draw greater attention to some of the world’s rarest diseases as a matter of significant public health interest.

In 2009, the U.S. began working closely with EURORDIS as part of a strategic partnership to combine forces across rare diseases on a number of initiatives, including promotion of Rare Disease Day activities and the development of an online rare disease blog archive. Click here to check out this informative resource.

A “rare disease” is defined in the U.S. as one that affects fewer than 200,000 people, a definition originating from the Orphan Drug Act of 1983. According to NORD, there are about 7,000 rare diseases in existence impacting a total of around 30 million Americans!

On this day, February 28, 2011, hundreds of patient organizations and their partners will be hosting events at national and regional levels to raise awareness about various rare diseases and the people whose lives are directly or indirectly impacted by them.

Each year, there is a theme for Rare Disease Day. This year it’s “Rare But Equal,” which focuses on many of the inequalities that impact the resources and attention rare diseases often receive. Since this is only the third year of observance in the U.S., NORD’s major objectives in 2011 are to continue building awareness of the observance using such tools as social media, traditional media and stories and events generated from the patient advocacy groups themselves. The organization also plans to develop a Rare Disease Physician database which should prove to be invaluable to such groups as EB families who may struggle to locate the right resources for support or medical care.

Are you aware of any Rare Disease Day events going on in your state? Twenty-seven states have issued a formal proclamation of Rare Disease Day in their respective states.

One easy way that you can get involved is right from your computer. Lundbeck Inc. is donating $1.00 for each individual click on its Raise Your Hand awareness banner ad campaign (up to $10,000) to spread the word about Rare Disease Day. Both Rare Disease Day USA and EB Friends have the Raise Your Hand banner ad on their websites’ home pages (you don’t even have to be an EB Friends member or log in to click!) Money raised will be contributed to a general research fund managed by NORD. In 2010, a similar campaign led to a $10,000 donation for NORD.

Sources:

Rare Disease Day USA

European Rare Diseases Organization

National Organization for Rare Disorders

Related Posts:

Free EB Information Resources

Resolve to Speak Up for EB Families

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