Tag Archives: rare

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I recently spoke with a patient who stated that his marriage was under a great deal of strain – which is highly understandable as the significant others of patients are the caregivers and are often in the line of fire, so to speak.

This was not the first time a wife or husband had confided this to me. Helplessness can cause patients and/or their caregivers great despair – to which wanting to run away is an understandable reaction.

Patients experience pain, embarrassment, and uncertainty when afflicted with P/P or other rare diseases.

The caregivers can empathize, the caregivers cannot truly feel what the patients are experiencing.

Everyone who is a caregiver tries his or her best to be supportive. Every patient who is undergoing this challenge is bound to be depressed and scared at times. Every family member may feel helpless most of the time.

This is the time to reach out and ask for guidance. Finding support groups is easier these days due to social media. Pemphigus Vulgaris is only one of 7,000 rare diseases that exist today and there are sources of information for each one of them. Search the Internet and contact local support groups. Check out the link given here for caregivers (It’s one of the very best!).

http://www.caregiveraction.org/

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Rare Disease Day (RDD) is a unique global advocacy effort to bring recognition of rare diseases as an international health challenge.

On March 2, 2015, rare disease patients, caregivers and advocates, rare disease organization, legislators, and industry representatives gathered at the California State Capitol. Will Zrnchik, IPPF CEO, welcomed the crowd and introduced Peter Saltonstall, President and CEO of the National Organization for Rare Disorders. Peter said, “NORD has been working … to find a therapy, make sure the pathways are clear, and to make sure that the incentives are there for industry to want to develop drugs for small populations.” California Assembly Member Katcho Achadjian (D-36) co-sponsored CA House Resolution 6 recognizing February 28, 2015 as Rare Disease Day in California.

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Inside the Capitol, Andrea Vergne, rare disease caregiver and advocate, told her grandson’s story living with a rare disease. Gary Sherwood, Communication Directors at the National Alopecia Areata Foundation, inspired attendees to become self-advocates and work with their elected officials. Adding to the advocacy theme, Eve Bukowski, California Healthcare Institute, echoed the need for patients to self-advocate. A special guest, California State Senator Dr. Richard Pan discussed the importance of rare disease advocacy and research.

Meanwhile, Marc Yale, IPPF Senior Peer Health Coach, and Kate Frantz, Awareness Program Manager, celebrated RDD events in Washington, DC. Marc attended NORD’s special preview of the new documentary “Banner on the Moon.” Patients, caregivers, advocacy groups and patient organizations saw Cindy Abbott’s inspiring. Cindy carries a NORD banner with her on several adventures to spread rare disease awareness. These included challenging herself to climb Mount Everest and participating in the 1,000-mile Alaskan Iditarod. Cindy’s perseverance and commitment to live life to the fullest were very inspiring.

Kate and Marc attended the American Medical Student Association’s Annual Convention. Two P/P patients, Liz Starrels and Mimi Levich, shared their P/P stories. Many students had never heard of P/P, or only briefly remembered it from their textbooks. This was a wonderful opportunity to spread awareness and encourage medical students to “Put P/P on their Radar!”

RDD 2                           RDD

Marc represented the P/P community at the Rare Disease Legislative Advocates (RDLA) conference.  There was an overview of the 21st Century Cures Initiative (http://energycommerce.house.gov/cures), which many believe is the rare disease community’s greatest hope for new and emerging treatments.

Marc also met with several Congressional Members and legislative health experts encouraging their support of the Orphan Product Extensions Now Accelerating Cures and Treatment Act of 2015, H.R. 971. This legislation would re-purpose existing drugs for rare diseases allowing patients greater access to vital treatments.

Marc RDD                                        Marc RDD 2

Marc attended a symposium celebrating rare diseases research efforts across NIH, the Federal Government and the entire advocacy community.

There are over 7,000 rare diseases. 1 in 10 Americans are affected and 95% of these diseases have no approved treatment. Rare Disease Week and Rare Disease Day is an opportunity for the Pemphigus and Pemphigoid community to be heard by advocating for yourself and others.

If you have questions about current legislation or would like information on how you can become involved, please contact marc@pemphigus.org.

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This article was originally was posted at http://www.medscape.com/viewarticle/840206

The National Organization for Rare Disorders
The Importance of Rare Disease Education
Sophia A. Walker

February 25, 2015

Recently a wise professor told my class that we medical professionals are some of the most powerful people in the world. Indeed, we have the ability to meet people at their most vulnerable, sometimes on the very worst day of their lives, and help them. “This profession,” he told us, “is such a privilege that we must never miss the opportunity to have at least done some good for every patient.” Over the past several weeks, as I have planned rare disease awareness events and begun preparing to enter the clinical years of my medical education, I find myself considering these words more frequently. However, at the end of the day, I wonder how powerful we are, really…

My interest in rare diseases originated during my senior year of high school, when I first started volunteering at the National Organization for Rare Disorders, Inc. (NORD). I was overwhelmed to discover the many obstacles experienced by patients who have rare diseases. On a technical level, any disease that affects fewer than 200,000 Americans is considered rare. Of the more than 7000 rare diseases, only approximately 350 have treatments that are approved by the US Food and Drug Administration (FDA). I found that individuals with these diseases, almost two thirds of whom are children, show great courage and perseverance in the face of significant discouragement. Although I had always wanted to be a doctor, it was not until I witnessed such unrelenting determination to overcome barriers in healthcare that I discovered my own enthusiasm for medicine.

All physicians strive to provide attentive medical care with the utmost compassion and empathy; however, as medical professionals, we must also be our patients’ most vocal advocates. Although I was not yet a physician, I still wanted to contribute to this effort. I wanted to provide a forum for the nearly 30 million Americans with rare diseases whose voices often go unheard in the medical community, and I wanted to share this passion with my peers. Every year, my fellow students and I host a Rare Diseases Awareness Event. Patients, students, clinicians, and researchers come together to share their experiences and insights regarding rare diseases. We strive to shed light on the lives of these individuals by allowing them to share their own stories, sometimes for the very first time.

Although many students may assume that we do not need to know as much about rare diseases because we are unlikely to encounter them in our practice, this is simply not the case. In fact, every one of us preparing for medical careers will see patients with rare diseases, and the extent to which we prepare ourselves for this reality will determine the impact we can have on these patients’ lives. Patients who have a rare disease face difficulty in every step of medical care, including diagnosis, treatment, and preserving quality of life. Sometimes, patients go years without receiving the correct diagnosis for their condition. Once they finally have an answer, often no treatment is available for their condition. As future physicians, we must aim to improve these prospects; the first step in doing so involves developing a keen understanding of this patient population.

The opportunities for medical students to learn about rare diseases are vast. Gaining a basic understanding of how the experience of having a rare disease is different from having a more common disease is equally essential. The National Institutes of Health (NIH) has great information related to rare diseases on its website, and the NORD website provides overviews and links to more than 200 patient organizations that provide excellent information about specific rare diseases. Students can also apply for a free NORD student membership by writing to bhollister@rarediseases.org. Once you register, you receive a monthly eNews and quarterly newsletter specifically designed for students planning healthcare careers. If you’re attending the American Medical Student Association annual convention in Washington, DC, on February 27 and 28, come to the NORD booth in the exhibit hall where patients with rare diseases will be sharing their stories.

With each speaker I listen to at a rare diseases event, with each new person I meet, I am filled once again with immense pride that our efforts, if even in a small way, have done some good. Unlike many people who are involved in advocacy efforts in this area, when I began this work, I did not have a personal connection to rare diseases. However, after years of getting to know people who have experienced these struggles, I can say that I now have several. In fact, it is the memory of the individuals I have met and the satisfaction in having contributed to raising awareness that has guided my interests, served as an influence in many decisions, and ultimately has been the driving motivation in achieving my aspirations. With every step I take moving forward in my career, rare diseases comes along with me and will continue to do so.

My passion for rare diseases advocacy has become perhaps the foremost aspect that defines me and has made me who I am. It has given me direction, has made me a leader, and continually prepares me to become one of those physicians who will do some good. A couple of years ago, one of my undergraduate professors asked me, “Are you that rare diseases girl?” He went on to say that a student who had been inspired to research rare diseases after attending my event had approached him with an interest in working in his lab. This is the reason why I raise awareness for rare diseases. If just one more person every year becomes inspired, that may eventually make all the difference in the world. It turns out that, in the end, we are all powerful together. After all, according to the NORD motto: “Alone we are rare. Together we are strong.”®