Rare disease

How appropriate that GLOBALHealthPR Australia partner VIVA! Communications chose Alexion’s David Kwasha to share his personal and Company views on rare diseases on World Rare Disease Day during our two-day annual general meeting in Sydney, Australia last week.AGM-14-Logo

He challenged our group of leading, independent health-focused public relations firms to do more to advance the cause of rare diseases, and in particular, ultra-rare diseases.

In the U.S., a rare disease affects fewer than 200,000 persons, and an ultra-rare disease, fewer than 6,000.

David seemed happy to know that GLOBALHealthPR has already supported the location and identification of nearly 100 percent more children with Progeria, most definitely an ultra-rare disease in which children age rapidly. To date, about 110 children have been identified living with Progeria, an increase from 50 or so just five years ago. We titled our campaign “Find the other 150” because at the time, about 200 Progeria children were estimated worldwide. [Read more…] about Realizing Rare Opportunities

Meet Ontlametse, left, from South Africa; Alicia, center, a PRF Ambassador; and Rafaely, right, from Brazil.

The Find the Other 150 Campaign is a joint Progeria Research Foundation and GLOBALHealthPR collaboration to locate the remaining 150 of the estimated 200-250 children living globally with Progeria.

Beginning in July and through the next several months, approximately 40 children from around the world will travel to Boston, Mass., in the United States to participate in the Triple Drug Trial, the latest clinical trial to test potential treatments for Progeria. To mark this expansion, The Progeria Research Foundation (PRF) is re-launching its highly successful “Find the Other 150” campaign to locate the remaining unidentified children living around the world with Progeria. [Read more…] about Help us Find the Other 150

Last week, Frannie Marmorstein and I were thrilled to head up to New York City to attend the PR News Platinum Awards Luncheon. We attended on behalf of Spectrum and GLOBALHealthPR, our partnership of international health care communications specialists, as a finalist in the “Pro Bono” category for our work on The Progeria Research Foundation’s (PRF) “Find the Other 150 Campaign”. And we won! This recognition, among the best of the best in the industry, was an honor for everyone involved in the campaign, and hopefully it will inspire others in the industry to leverage global collaboration for a cause they are passionate about.

For those of you who aren’t familiar with Progeria, it is an extremely rare, rapid aging disease that causes children to age prematurely. Children with Progeria die of heart attacks or strokes at an average age of 13 years, so time is not on our side as we work to identify children around the world.

But this award isn’t the first time an important win has come out of this campaign. Every time a child is identified as a result of the campaign, it’s a win: a win for the child, because he or she will get the unique medical care he or she needs, a win for the child’s family, and a win for PRF, because these children help to advance research toward treatments and the cure for Progeria. We’ve identified 26 to date, a 48% increase in just two years (and 2 more since we submitted our entry for the award)!

We’ve blogged about the “Find the Other 150” campaign before. But the results keep getting better and better. In October 2009, only 54 children living with Progeria had been identified around the world. But experts believed that another 150 children around the world had not yet been identified or diagnosed. GLOBALHealthPR approached PRF about launching a global awareness campaign to search for unidentified children with Progeria. When the campaign began, PRF’s medical director said that if even ONE child was identified, the campaign would be a success. No one expected that we would be so successful so quickly.

So here we are two years and 26 children later (now totaling 80 children around the world with Progeria), and our campaign is going strong. Receiving the PR News Platinum Award at last week’s luncheon was a wonderful reward for our great work. But this campaign is nowhere close to finished. We will continue to work with our GLOBALHealthPR partners until we accomplish what we set out to do – Find the Other 150. And every time a new child is found and gets the support they need, that’s a win for us.

I learned several weeks ago that I’m to receive the Genetic Alliance “Art of Reporting” Award in June for Spectrum’s work on behalf of The Progeria Research Foundation‘s (PRF) “Find the Other 150” campaign. I want to publicly thank Genetic Alliance for recognizing this campaign and our commitment to such a rare disease.

Progeria is a rare, rapid aging disease in children and our client, PRF, is working to find a treatment and cure for this disease. As of October 2009, experts estimated that there were approximately 150 unidentified children with Progeria around the world. Spectrum and our global partners, GLOBALHealthPR, teamed up with PRF to launch a global communications effort to find these 150 children.

I am accepting this award on behalf of our team at Spectrum and our GLOBALHealthPR partners who bring their local market expertise to this global outreach effort. Our partners have been so instrumental in the success of this campaign, continually assisting with media outreach and support to find new and creative channels to spread PRF’s message.

This campaign is a great example of the power of strategic global communications. When we started the “Find the Other 150” campaign more than a year ago, the medical director of PRF said that if we found even one child, the campaign would be considered a success. Today, our efforts have led to the discovery of 17 children with Progeria from 12 countries around the world. Each child identified brings PRF one step closer to finding effective treatments and a cure. In addition, each child benefits from PRF’s unique medical care and is connected with trained medical professionals as well as other families of children with Progeria. PRF’s drive and determination is awe-inspiring and continues to be a daily motivation for our team.

As honored as I am to receive this award, I am just as honored to have the privilege to work with PRF, as well as serve on the organization’s board of directors. Our Spectrum team and GLOBALHealthPR partners are passionate about working with PRF to pursue the “Find the Other 150” mission of identifying children around the world with Progeria. We hope to continue to exceed their expectations in finding other children as the campaign continues.

I’ll report back on the Awards Ceremony in June. Thank you again, Genetic Alliance!

Today, Amanda Sellers shared the results of our global awareness campaign at the 2010 Centers for Disease Control and Prevention (CDC) fourth annual National Conference on Health Communication, Marketing and Media. The “Find the Other 150” campaign “found” 24 percent more children with a rare, fatal, and rapid aging disease called Progeria, a disease affecting less than .01% of the world’s population.

In creating and carrying out the campaign for The Progeria Research Foundation,  firms in 10 countries collaborated through GLOBALHealthPR, the largest independent public relations group dedicated to health communications worldwide.

Reaching out to media and medical professionals with culturally relevant and strategic communications methods, as well as using online tools such as the campaign website (www.findtheother150.org), the awareness generated more than 20 inquiries to PRF about potential children with Progeria in six months. From these inquiries, 13 new children with Progeria were identified from seven countries, increasing the total number of children known to have Progeria worldwide to 67 (a 24 percent increase). Watch below to hear more about the campaign from Amanda Selllers and click here to view the campaign poster and press release.

Megan Lustig - site
Megan has Progeria. GLOBALHealthPR is leading the worldwide search for 150 other children with Progeria.

A global quest for “missing children” begins in earnest today.

Only 54 children with Progeria, a rare disease that causes premature aging in children, are known to researchers and patient advocates. However, experts estimate that another 150 unidentified children with Progeria live throughout the world.

GLOBALHealthPR partners have pooled our resources in an international campaign to promote awareness and dialog to help locate these children. Each child who is brought forth could benefit from the medical services and unique care that The Progeria Research Foundation (PRF), our pro bono client, can provide.

“Our goal is to find these children as quickly as possible so we can educate their families and health-care providers on the latest in Progeria research and treatments. We are excited to launch this campaign with GlobalHealthPR because their global reach will help us spread awareness to a worldwide audience,” said Audrey Gordon, President and Executive Director of PRF.

Progeria is personal for Gordon and her sister, who is PRF Medical Director Dr. Leslie Gordon. Dr. Gordon’s son was diagnosed with Progeria more than 10 years ago and the family is dedicated to finding a treatment and cure.

If you have contacts or friends overseas, or if someone you know or treat has Progeria-like characteristics, please contact The Progeria Research Foundation at www.findtheother150.org for resources that will help to provide them the best treatment possible.