International Federation of Marfan Syndrome Organizations (IFMSO)
E-Newsletter

(Vol 7, Number 1, January 2012) http://www.marfanworld.org

Table of Contents

Editor's report
Celebrate International Rare Disease Day - February 29, 2012
Leap Year!!
EURORDIS, NORD and all Rare Disease Coalitions
In Honor: Cheryll Gasner
E-Mails and Messages

Priscilla Ciccariello - IFMSO President and Editor of IFMSO E-News

Editor's Report:

It is a rare person who hasn't experienced a rare disease in their family or in the family of a friend. This February 29th, 2012, is a great opportunity to celebrate rare diseases on a "Leap Year" Day. International Rare Disease Day is being celebrated throughout the world and the National Organization for Rare Diseases (NORD) and Rare Diseases Europe (EURORDIS) are carrying the banner for this - the fifth year of celebration of International Rare Disease Day. What a great time to bring "rare diseases" - or "rare disorders" as I prefer to call them - to the attention of the world community.

Diseases or disorders, which are called "rare," are defined as a disease, which affects under 200,000 people in the world. The term, "rare diseases "is becoming more familiar to all of us throughout the world, due to the work of those who advocate on behalf of their own disorder, or all such disorders. So now is the time to engage the wider medical and patient community.
Rare Disease Day is an annual, awareness-raising event co-ordinated by EURORDIS at the international level and NORD, and the National Alliances of Patient Organizations on a national level in the U.S. EURORDIS is a coalition of European rare disease organizations who partner to bring greater awareness to the issue and for research on these diseases.
Two such Coalitions celebrating this important day are the Heritable Disorders of Connective Tissue (CHDCT), http://www.chdct.org - representing over 200 such conditions, and the International Federation of Marfan Syndrome Organizaitons (IFMSO), which includes over 20 Marfan organizations throughout the world - with information about the Marfan syndrome in the different languages of all these countries. Check out our web site: http://www.marfanworld.org

February 29, 2012 marks the fifth international Rare Disease Day organized with rare disease national alliances in 25 European countries and the U.S. . On this day hundreds of patient organizations from more than 40 countries worldwide are organizing awareness-raising activities converging around the slogan "Rare but strong together". EURORDIS was founded in 1997 - following the example of the National Organizations of Rare Disorders (NORD) in the United States. I am sure there are many involved in the rare disease community who remember Abbey Meyers, who led the struggle for "orphan diseases" in the 1980s until her recent retirement. Meyers was an impressive leader in the effort to bring greater awareness and research to these little known diseases. The identity provided to rare diseases gives voice to many millions affected with rare diseases throughout the world.

Those of us who have been active in the rare disease world for many years can be grateful to see this International Rare Disease Day - as it is experienced throughout the world. We have worked hard for this recognition and it is an important achievement that improves the lives of many millions of people, increasing understanding and research. The research on these disorders serves to enlighten the more common diseases. We must continue to support these activities and work to increase awareness of the continuing need for research. What improves the lives of some, improves the lives of all.

INTERNATIONAL RARE DISEASE DAY
Activities throughout the World !!

The Food and Drug Administration (FDA) Patient Advocacy Day on March 1, 2012:

In honor of Rare Disease Day, 2012, the Food and Drug Administration (FDA) will host a special day - long event on March 1, 2021, for rare disease patient advocates. The purpose will be to enhance awareness of FDA's roles and responsibilities in the development of drugs, biologics, and devices for rare diseases. This event will take place at FDA's White Oaks campus in Silver Spring, MD. The program will be interactive, with opportunities for questions and discussion, along with presentations by key FDA officials. For those unable to attend the in person meeting, there will be a simultaneous webcast. (Registration is necessary).
Contact: http://tinyurl.com/6m22as2

National Organizations of Rare Diseases
(NORD) activities:

Also, in the United States, NORD has just launched the official Rare Disease Day US website for 2012. This year, Rare Disease Day will be observed around the world on February 29, 2012. As a Rare Disease Day Partner or Ambassador, you will be receiving all tools and updates for the campaign. For now, these include:
" a Rare Disease Day countdown badge to post on your website showing your support for this global awareness effort
" a press kit to help you share global themes of the day with your media contacts
" educational tools for teachers, including a 1 to 3 day high school biology curriculum developed specifically for Rare Disease Day
" a downloadable flyer that you are invited to use for our "Handprints Across America" photo gallery
" a "Visions of Solidarity" page where you can tell us, in a picture or words, what "Solidarity", the global theme for Rare Disease Day 2012, means to you
This year, Rare Disease Day will be on the ultimate rare day -- Leap Day. Also, this is the fifth anniversary of Rare Disease Day globally. As a result, this year's observance will be bigger and better than ever with many new activities and events to raise awareness and understanding.

SAVE THESE DATES!
Special events this year will include:

• a Capitol Hill Day hosted by NORD on February 28
• a day-long celebration hosted by the National Institutes of Health (NIH)-February 29
• a Rare Disease Patient Advocacy Day hosted by
the Food and Drug Administration (FDA)

SHARE YOUR NEWS & EVENTS!
As your plans develop, be sure to let us know about them so we can share them with others. Help NORD make Rare Disease Day 2012 the biggest and best Rare Disease Day ever!

For news about of what's happening in the U.S. and around the world, visit the global site hosted by EURORDIS at www.rarediseaseday.org. Activities will take place across in the United States, and in Europe, all the way to Russia, continuing to China and Japan, in the US and Canada, and Australia and New Zealand! We hope you will get involved.

Check out The National Institute of Health (NIH) - National Center for Advancing Translational Sciences -
New center to speed movement of discoveries from lab to patients
In a move to re-engineer the process of translating scientific discoveries into new drugs, diagnostics, and devices, the National Institutes of Health has established the National Center for Advancing Translational Sciences (NCATS). The action was made possible by Congress' approval of a fiscal year 2012 spending bill and the president's signing of the bill, which includes the establishment of NCATS with a budget of $575 million.
NCATS will serve as the nation's hub for catalyzing innovations in translational science. Working closely with partners in the regulatory, academic, nonprofit, and private sectors, NCATS will strive to identify and overcome hurdles that slow the development of effective treatments and cures.

"Congressional support for the National Center for Advancing Translational Sciences marks a major milestone in mobilizing the community effort required to revolutionize the science of translation," said NIH Director Dr. Francis S. Collins, M.D., Ph.D. "Patients suffering from debilitating and life threatening diseases do not have the luxury to wait the 13 years it currently takes to translate new scientific discoveries into treatments that could save or improve the quality of their lives. The entire community must work together to forge a new paradigm, and NCATS aims to catalyze this effort."

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RARE DISEASE STUDY

IFMSO E-Newsletter published the following study in an earlier newsletter, but it is also relevant to the Rare Disease Day celebration, so I am featuring it again. It was conducted by the EURORDIS coalition in 2010, and serves to illustrate the problems faced by the millions of people who "suffer" from some kind of "rare" disorder. It also helps to highlight the many steps being taken by researchers and organizations to address these concerns and improve the quality of life for individuals and their families:

"European Rare Disease Patient Groups in Research:
current role and priorities for the future"

Conducted by the European Organisation for Rare Diseases (EURORDIS) between October and November 2009 this survey aimed to find out and bring to the forefront, in what ways and to what extent, patient organisations support research. The survey was designed to find out which are the research areas that should be given priority to, from the patient's perspective.
The results of this survey will help to acknowledge the role of patient organisations in research, and will contribute to shaping the future research agenda of the European Union. [As well as serve as a model throughout the world.] The results will also help national patient alliances advocate for more and better research for rare diseases at the national level.
772 rare disease patient organisations received an invitation to fill out the on-line questionnaire, which was available in 6 languages (EN, FR, DE, IT, ES, HU)
EURORDIS received 309 valid responses from members and non-members (40% response rate); representing 110 rare diseases and 1.3 million patients in 29 European countries.
This work was undertaken in collaboration with the Centre de Sociologie de l'Innovation (Ecole des Mines, Paris, France)
Key findings:
" Patient Organisations (POs) show a high interest for research
" POs have a high commitment to research despite great differences in terms of number of members and budget
" POs show strong will to collaborate with researchers, not only by triggering encounters between clinicians, researchers and patients, but also by giving them logistical and financial support
" POs in Europe have devoted a total minimum of 13 million euro to research last year (not including funding from the Association Française contre les Myopathies - AFM - which gives on average 60 million euro to research every year)

PATIENTS FUND RESEARCH
" 37% of POs funded research in the last 5 years
" Amongst them, half spend more than 30 000 euro yearly and one quarter spends more than 112 000 euro a year
" Some devote more than 100% of their budget, which means they organise fundraisers specifically for research
" POs who are 10 years or older spent about half of their budget on research.
Amongst those POs who funded research:
" 70% had not only funded a specific research project but had also initiated it.
" 75% had helped fund the operating budget of a research project.
" 54% bought equipment and 47% had granted fellowships for young researchers

WHAT KIND OF RESEARCH DO PATIENTS FUND?
" POs fund mostly basic research.
" Patients are naturally interested in all areas of research since they are concerned by many areas of research (genetics, therapeutics, social, etc)
" 1 out of 2 patient organisations fund basic research and 1 out of 3 fund human and social science research. Contrary to the common belief that patients only support therapeutic research, it is clear that patient groups understand and invest in long-term research projects, as well.

PATIENTS SUPPORT RESEARCH IN OTHER WAYS TOO
" Patient organisations support research mainly through actions aiming at creating links between patients, researchers and physicians.
" 1 in 2 POs support research by helping to identify patients to participate in clinical trials or by providing information and counselling for potential participants in clinical trials.
" Almost 1 in 2 POs collaborated in clinical trial design and helped define research projects by highlighting patients' needs and expectations.
" 1 in 3 POs participate in scientific committees within institutions, which reveals that their legitimacy is increasingly acknowledged and that their desire to support research is also political.
Correlation between the age of the PO and degree of involvement in research:
" 25% of the POs who responded have spent more than 20 years supporting research. They are the ones who support research the most and are most satisfied with the results.
" The smaller, younger patient groups (25% of the PO who responded have less than 5 years of existence) are also actively involved in research by providing non-financial support. They give encouraging signs of increasing cooperation and progress in their relations with researchers.

WHAT ARE PATIENTS' PRIORITIES?
" Patients say the highest priority for the allocation of public funds should be clinical research (therapeutic and diagnosis). Nevertheless, their funding allocation priorities do not coincide with the funding allocation priorities they expect from the public sector. Patient groups fund mostly basic research and epidemiological studies.
" Patient groups see themselves as partners, identifying the gaps and supporting the first steps of research left out by the public or private sectors.

WHAT ARE THE OBSTACLES THEY'VE ENCOUNTERED?
" According to patients, the biggest obstacle in the progress of research is the lack of researchers and clinicians specialising in rare diseases and the lack of coordination amongst them. Most obstacles encountered are the direct result of the rareness of the disease. However, they also point to organisational problems, such as lack of coordination and multidisciplinary.

RELATIONS BETWEEN PATIENTS AND RESEARCHERS:
BRIDGING THE GAP
" Relations with researchers are very good for the biggest, oldest and richest patient groups, (such as Neuromuscular and Cystic Fibrosis)
" For the youngest POs with smaller budgets, their level of enthusiasm to support research is not matched by that of researchers, who are less willing to collaborate with them.
" Nevertheless, the older and most established patient organisations have increasingly good relations with researchers, which means that there is a virtuous circle of collaboration between patients and researchers - increased collaboration improves trust and leads to more collaboration
" This means that there is hope for the smaller and younger patient groups to build increasingly good relations with the research community over time.
" In practice, it is important to address the expectations of young and small patient groups regarding closer links with the research community.
CONCLUSIONS
" Rare disease patient organisations are playing an important role as catalysers of research on their respective diseases.
" Due to their intimate knowledge of their diseases and lay expertise, patient organisations are in a strategic position at the crossroads of all fields in research (from basic to therapeutic), patients are in the best position to highlight the setbacks in basic research and clinical applications and the weaknesses of translational research for their disease.
" Rare diseases patient organisations are calling for a "research model" where basic and clinical research is conducted in parallel and through an intense dialogue between scientists, clinicians and patients. They are calling for partnering of all stakeholders.
" It is clear that despite their enthusiasm, POs do not have the means or the ambition to control research and carry all research by themselves. POs will not substitute public institutions but they can be valuable partners in research by:
" Identifying the gaps and giving financial or logistic support to the initial stages of research projects that can be taken on later by the public or private sector.
" By contributing their unique knowledge of each disease, and by establishing relations of trust between patients and researchers.
A summary of this survey was presented at the European Workshop on Rare Disease Research, held on the occasion of Rare Disease Day 2010 (Brussels, March 1st, 2010)

Author: Paloma Tejada

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IFMSO Tribute to Cheryll Gasner (1957 - 2011)
Founding member of the National Marfan Foundation

In November we were saddened to learn of the death of Cheryll Gasner, long-time advocate, and founding member of the National Marfan Foundation, (United States). This tribute is to honor her life and lifelong work in the National Marfan Foundation:

I actually knew about Cheryll long before I met her. When I and my sons, Peter and John attended the first National Marfan Foundation "conference" at the Enoch Pratt Library, in 1981 in Baltimore, Maryland, we were surprised to meet Faith Clark, NMF President; Mary Ann Roney, Vice President, and Dawn Trump, Treasurer. We were stunned to meet these three wonderful young women - who seemed like our relatives. They all talked about their wonderful friend, Cheryll Gasner, who had joined them in the first meeting held in 1979 in Baltimore, Maryland at Dr. Victor McKusick's home, this, to organize the National Marfan Foundation (NMF). Cheryll had just left to begin a career in California. Over the years we were fortunate to meet with Cheryll and her devoted husband, Steve, and share her dedication and contribution in establishing the NMF's early goals.

In 1992, the NMF sponsored the 2nd International Symposium for Research on the Marfan syndrome held in San Francisco, CA. It was here that Cheryll was invited to give the keynote address, which she titled, "The Joining Circles." In this keynote address, Cheryll described the circles created by patient and family collaboration, coupled with the partnership of the researcher and physician within the context of the National Marfan Foundation. She could see, in those early days, the enormous impact that this collaboration - this "joining of circles" would lead to in the partnership to understanding this complex disorder - thus helping thousands of people through the coming years. The meeting was attended by over 200 researchers and Cheryll's address was an inspiration to those attending.

Cheryll was the Nurse Coordinator of the Stanford University Marfan syndrome clinic, and served as a member of the NMF Professional Advisory Board, also contributing to the research of four of the abstracts presented during the symposium. It was in 1992, at this meeting, that we all felt the excitement of research in the use of Atenolol to reduce aortic growth, as well as the cloning and sequencing the Fibrillin (FBN1) gene which was featured by the speakers at the symposium. Cheryll was right in the middle of this excitement and was engaged in the effort to spread the word about these new, important findings - which led to more amazing research.
Cheryll was, in a sense, a brave pioneer crossing the prairie heading toward the open country, braving the unknown while helping to lead the way through the maze of changing technologies and drug impacts, which now provide so much benefit to those affected with Marfan. Today, those who have Marfan syndrome have benefited from Cheryll' courage and strength of will throughout her life's struggle with this condition and her complete dedication and bravery to live her life to the fullest.

We owe so much to her for her dedication and willingness to share this love of life with her friends and all in this Marfan family. The three young women who joined her back in 1979 to organize the National Marfan Foundation have since died, and now Cheryll joins them as they were together in life. We owe a debt to these young founders and to their dedication to the cause. Many today who never had the opportunity to meet Cheryll, and future generations in the coming years, have benefited from her dedication in the support of research and patient care. Yes, we will miss her smile, her boundless energy through the years, and the light from her spirit.

Priscilla Ciccariello, NMF Chair Emeritus: November, 2011

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Recent IFMSO E-Mail Correspondence:

Canada

The October 2011 CMA Conference in Halifax was another successful effort on behalf of the Canadian Marfan Association (CMA). The CMA Research Grant Recipient, funded by the Temerty Family Foundation, was announced: Dr. Julie De Backer, M.D., Phd, (The Centre of Medical Genetics, Ghent), for her project entitled: "Pathophysiological and Pharmacological Study of Left Ventricular Dysfundtion in a mouse model of Marfan syndrome. " We look forward to learning of the outcome of this research project.

The CMA will be celebrating their 25th year anniversary and are preparing a special montage of pictures and events to mark this event. We look forward to receiving some pictures of this event. The CMA web site has been updated and is providing current and continuing informational updates to their members. Their web address is: www.marfan.ca Check it out.

Denmark:

We have received updates from the Denmark, the MS Landsforeningen for Marfan Syndrom. Their web site address is: www.marfan.dk The recent newsletter, Nyhedsbrev, can be downloaded from http://marfan.dk/nyhedsbrev.php. This information provided by Bodil Davidsen, (Sekretariatsleder/socialradgiver), and Mogens Buheit, (databasetorer). Thank you for the update, Mogens.

Germany

We had an e-mail from a young woman in Germany, working on a presentation on the Marfan syndrome connected with sport and to what extent it is possible to become involved in sports. This is an important question, particularly important to young people who want to participate in the community of sports. There have been many publications about this in the past 10 years. Those with which I am familiar are the publications on subject areas published at the National Marfan Foundation, www.marfan.org. Check the drop down options for information - "physical activity guidelines" - which refer to specific sports. These articles are vetted through the NMF Professional Advisory Board, and are written in depth. Excellent to refer to periodically and check for updates. Of course, these are in English, and the specific web sites of the world-wide Marfan organizations are always important for reference.

We are always pleased to get questions from students working on their papers on MFS subjects and will always send materials (electronically) and references to additional resources if and when available. Send you questions in !!

India

We have a faithful contact in India, Chiranjib nath, and list his name and contact information on the IFMSO contact list. He e-mailed us recently about a message he received from someone who might have Marfan. The contact person has difficulty with his eyes, and we know that that can be a serious problem for those whith Marfan sydnrome. We have tried to research the options in India regarding ophthmalogists familiar with Marfan, and are still working on this. We did provide the questioner with some suggestions (from his district) and also some early journal articles on the subject, but there is still more to be investigated. We will try to have this information before our next newsletter in March, 2012.

Italy

L'Assostefano Stefano - Bambini e Marfan e lieta di invitari La al concerto del "Lambetta Duo." The concert was held on December 23, at the Chiesa Sant'Eufemia. Percussioni, Mourizio Paletta ; Direttore, Emilio Piffaretti. A concert was also held on January 6th, 2012. To obtain more information about future concerts held by the L'Assostefano Stefano, please contact : assostefano@alice.it Their web site address is: www.assostefano-bambiniemarfan.it. Check it out to update your schedule if you will be visiting in Italy during the next few months.

Japan

Sent to IFMSO on 12/21/11 with a report on the devastating earthquake. Also, on a happier note, a report on the interesting seminar held in Japan, on Nov. 20, and Dec. 10, 2011.
Dear Priscilla and members of IFMSO,

First, I always appreciate for your warm messages, which give us hope.
We will never forget the year 2011 when 2 tragic events hit Japan; the East Japan Big Earthquake and failure of Fukushima Dai-ich Nuclear Power Plant. Although disaster-struck areas still face severe situation, we are thankful for the kind support and prayers from all over the world.

After these disaster we did what we can do now; we hosted a seminar for Marfan, Loeys Dietz and Ehlers-Danlos syndrome affected people in corporation with other patient associations and researchers. It consisted of a questionnaire on disaster, presentation of the latest research of each disorder, Q&A, group works (blood vessel, orthopedics, heredity and welfare) and informal social time. Marfan Network Japan (MNJ), Japan Ehlers-danlos syndrome Fellowship Association (JEFA), Dr. Hiroko Morisaki of National Cerebral and Cardiovascular Center (NCVC), Dr. Yasunobu Hirata of Univ. of Tokyo, Dr. Atsushi Watanabe of Nippon Medical School and Dr. Tomoki Kosyo of Shinsyu Univ. cohosted the seminar.

This wonderful seminar held for the first time in Japan conducted for 2 times (Tokyo- Nov 20, Osaka-Dec. 10). Dr. Hirata who represented research team on Marfan syndrome talked about diagnostic criteria for Japanese, out-patient section which see patients' allover condition and relationship between periodontal disease and aortic aneurysm. From presentations of other doctors, we could know the difference and common points among related disorders. At the Q&A session, there was a question on exposure to radioactivity from CT and a request to foster research and social support.

The attached picture is taken in Osaka. About 140 people were participated. Many doctors, esp. Dr. Hiroko Morisaki of NCVC, genetic counselors and members of patients associations supported us to conduct the seminar. We will make further effort to support affected people from connective tissue disorder and to enhance research by conducting seminars like this together with those who have the same goal.

I wish the coming year 2012 will be peaceful and hopeful one for all of you and us.
JAMAA ***************************************
Japan Marfan Association (JAMAA)
Keiko Inoi, Representative Director
e-mail: info@marfan.jp
web site: http://www.marfan.jp
Twitter http://twitter.com/marfanJAMAA

Yukako Ogura has also been in touch with us through facebook and e-mail, and also has sent us this information for the IFMSO E-Newsletter:
"The Japan Marfan Association hosted connective tissue disorder seminar on Dec. 10, 2011. About 140 people attended. Professors and Doctors hosted same seminar in Tokyo in Nov- we did the event at 2 locations. These events are sort of epoch-making because 1) for the first time doctors and patients associations hosted this kind of event; and 2) people affected from 3 kinds of rare connective tissue disorder gathered and talked about their concerns.

Dr. Hirata from Univ. of Tokyo presented latest issue on Marfan. He stressed importance of oral care because periodontal disease has negative effect on aneurism. He also talked about ARB and ACE inhibitor, which decrease angiotensin excessively produced in Marfan patients. What I thought interesting is that the main component of periodontal the reason Mafan people have higher rate of periodontal disease is due to fibrillin…." This is part of the post was sent to us by Yukako Ogura. Thank you, all in the JMA for this excellent reporting .
Also, as always, we were happy to hear from our friend, Yoko Shimozaki. I always appreciate hearing from her. She reported on the MNJ and wrote that they are working despite all of the turmoil of last year, also illness of one member of the organization. We will add Mr. Yoshihisa Taniguchi to our contact list for the MNJ and are glad that he is well, and back in his role of "Communications" with other international organizations. We look forward to his reports and updates.

Slovakia
We had a lovely holiday greeting from Betty Lukovicova, the Slovak Marfan Association, so good to hear from her. If you wish to contact her, e-mail is Marfan.sk@mail.t-com.sk, and web site: http://marfan.szm.sk/ We look forward to learning of her activities in 2012.

Spain - Catalunya

 

"Greetings from Barcelona - With a report on their meeting, held at the University Hospital of Valle Hebron, which was held on 3 -12, in 2011, on the 'European Day of Marfan syndrome'.

This event was attended by the Director of the hospital care Dr. Jaume Roig, Dr. David Garcia-Dorado and Dr.Arturo Evangelista also Sima Catalonia and SimaCentral.
SIMA Catalunya president, Jaume Rossello, presented an Honorary Member plaque to Dr. David Garcia-Dorado, for their dedication and effort in the treatment of Marfan syndrome.

We welcome the widest possible dissemination of the event.
(And we apologize for our ignorance of the English language.)
I am attaching pictures. "

Sent by Alicia Garrigó, Vicepresident de SIMACatalunya
Associacion d'Afectats per la Sindrome de Marfan de Catalunya
Marfan Syndrome de Catalunya. - http://www.sindromemarfan.cat, http://simacatalunya.blogspot.com/ [Thank you, Alicia - we always welcome all information sent and don't worry about mistakes in English or my mistakes as well. Best, IFMSO ]

Great Britain

We heard from Diane Rust, (Chairman/Support Co-ordinator, Marfan Association UK), with their new e-mail address. contactus@marfan=association.org.uk
It is always good to hear from Diane, and hear of her many activities. She has devoted many years to "spreading the word on Marfan," and her support of Marfan and rare disease research. The Marfan Association UK newsletter is an excellent resource, always full of important information, articles and events going on in England and throughout Great Britain and the wrold. The web site contains many of the on-going activities, and can be accessed by the "In Touch" section on the site.

United States

There are a number of research studies that are on-going, funded by the National Marfan Foundation (NMF), available for review by checking in to the NMF web site: http://www.marfan.org (Check out the "tool bar" at the top and the drop down options.)
We have had a number of requests recently about ophthalmologic concerns and the following John Hopkins University study should be interesting to learn about:

Marfan Eye Study

Dr. Dietz and his colleagues at Johns Hopkins University are investigating the eye problems that individuals with Marfan syndrome have, and whether any currently available medications help with these problems. They are interested in hearing from individuals who do not have significant eye problems, as well as those who do. This will also help them get a better understanding of the types and frequencies of eye problems that individuals have. They are looking for information on individuals in all age groups.
The study requires filling out a short questionnaire about your medical diagnosis, eye history, medications, and past/current eye physicians. The questionnaire should take about 10-20 minutes of your time, depending on personal history. A consent form and medical release form will also be included. Records will be obtained from your past/current eye physicians, so if you do not know exact details of your eye history, this will not be a problem.

If you are interested in participating, please email the team at MarfanEyestudy@jhmi.edu
and they will send you a copy of the questionnaire, consent form, and medical release form to sign. Please also feel free to ask them any questions you have in your email.

Please note that patients who are currently enrolled in the losartan-atenolol clinical trial are not eligible for this study, because their medication type is unknown.
+ + + + + +
Our next newsletter will be in March, 2012. Please send any notes and activities of your organization and we will add them. It is always helpful to learn what is going on in other countries.

And don't forget to celebrate International Rare Disease Day on February 29, 2012 !!

Priscilla Ciccariello, IFMSO President and Editor of IFMSO E-News,
January, 2012

Please contact the Editor: Priscilla Ciccariello if you have any questions regarding the IFMSO E-Newsletter, or if you wish to contribute to the articles and news page. E-mail me at: cilla71@aol.com or Peter Ciccariello , webmaster.

Contact Information

President: Priscilla Ciccariello

Vice Presidents:
Wenche Snekkevik, (Norway),
Justin Nix, (Australia),
Yoko Shimozaki, (Japan)
Pernille Mai Strauss Warren, (Denmark)

Treasurer: Cheryl Williams, United States

Webmaster: Peter Ciccariello