What is RareConnect.org?

RareConnect.org is a partnership of EURORDIS and NORD that aims to connect rare disease patients globally. There are three Partners and Patient Groups in the Trimethylaminuria Community:

• TMAU UK
• Trimethylaminuria Foundation (US)
• MEBO Research (US and UK companies)

EURORDIS is the European Organisation for Rare Diseases, “the voice of 30 million people affected by rare diseases throughout Europe…is a non-governmental patient-driven alliance of patient organizations and individuals active in the field of rare diseases, dedicated to improving the quality of life of all people living with rare diseases in Europe.”

NORD is the National Organization for Rare Disorders, “a 501(c)(3) organization, is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.”

WEBINARS sponsored by RareConnect: Thanks to Rob Pleticha’s, Eurordis Online Community Manager, dedicated hard work, RareConnect provides the Webinars Series for our community. RareConnect will be hosting the next webinar on February 1st. For additional information on this presentation and how to attend, please see the post in this blog.

FIRST WEBINAR OF 2013
February 1, 2013, United States : at 5pm GMT/noon EST: Drs. George Preti, Paul Fennessey, and Danielle Reed on TMAU webinar with George Preti, Paul Fennessey, and Danielle Reed,

1. Updates on genetics of TMAU (Dr. Reed), and
2. TMAU : evaluation of individuals with malodor problems (Preti, Fennessey, Reed).

WEBINARS OF 2012
December 2, 2012, New Zealand : Dr. Richard Mackay on Laboratory testing for trimethylamine excretion

October 28, 2012, London : Dr. Robin Lachmann & dieticians, Heidi Chan and Charlotte Ellerton on Diagnosis and Treatment of TMAU – The London Experience

September 23, 2012 London : Drs. Elizabeth Shephard and Ian Phillips on FMO3: bugs, genes and drugs.

---

---

María

María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
www.brasil.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)
MEBO Brasil - Blog (Portuguese)

---

SUPPORT THE MEBO MISSION: Click Amazon button at right sidebar of this blog when shopping online for the holidays
at no extra cost to you.
MEBO gets small commission from Amazon.

Please use your credit card to make your donation to MEBO.

Subscribe for latest posts : Enter your email address:

Delivered by FeedBurner

---

A EURORDIS and NORD Member Organization

RareConnect TMAU Webinar: Media and human rights for sufferers

Click orange 'play' button above to play the audio

Karen has worked as a part of MEBO Research and supports MEBO’s work. She thanks Rob and Allie for RareConnect and the person behind the scenes, who went through so much trouble to make this happen. She expresses that she feels this is a great opportunity for us to spread awareness.

How do we convince the public and medical community that we have a human rights issue?

Rare Connect is providing us with this platform to come together and stand up for our human rights.

Whether we have TMAU or another permanent malodor issue, we’ve all experienced disrespect from others or have been bullied or treated badly. Because we haven’t been labeled as disabled and since malodor conditions and TMAU are not widely understood, we’ve had to deal with the mistreatment from others, and therefore, been denied our human rights.

In order to make our voices heard, we need to join all the various communities who suffer from malodor disorders.

In order to make our voices heard, we need to join all the various communities who suffer from malodor disorders. We need cohesion amongst all of the forums, and Rare Connect is providing us with this platform to come together and stand up for our human rights.

In the workplace, for example, people are entitled to breathe clean air, but we also have the right to work and contribute positively to society. If we are denied this right, we suffer from psychological effects such as depression, especially the younger people. It affects not just our lives but our family and friends as well. We are basically a disabled community, but do not have disability rights.

We need to get rid of our defeated attitude. Obviously, change will not occur overnight. We need to get rid of our defeated attitude. Low self-esteem, guilt and shame contribute to preventing us from providing what we need. There are many people in our community who have dedicated themselves to the cause and because of their plight, many of us have benefited.


How can the media be used effectively in odor sufferer’s struggle for Human Rights?

Karen also knows of a good journalist who will find opportunities for us to speak.

There was a story in the media that used a negative example of TMAU, which was offensive and a big shame, since the program they were referring to has led to several people becoming diagnosed and helped to spread awareness about TMAU. Many sufferers got together and got the article removed.

The media may recognize the TMAU protocol as a method of controlling odor, but we all know this protocol does not give positive results to everyone.

Newspapers are known for changing headlines at the last minute, and there is no way of controlling it. Their main interest is to sell newspapers. The media will also misrepresent by giving inaccurate information. The people who need to be heard in the media are the people with these odor conditions because our experiences are accurate. The media may recognize the TMAU protocol as a method of controlling odor, but we all know this protocol does not give positive results to everyone. When being interviewed by the media, it’s important to state this known fact. This way people will not think we all can be cured of our odor by following the protocol and they will not expect more from us.

There have been brilliant articles and radio programs in the past two years. Our stories are interesting and authentic and will raise awareness and hopefully destigmatize the whole thing. If we’re clever and know what we want to say and represent ourselves in our own words, the medical establishment will take us more seriously and reflect that in their presentations.

We have to know what we want to say to the media and be decisive and not be pressured to divulge our private lives.

We have to know what we want to say to the media and be decisive and not be pressured to divulge our private lives. Karen encouraged us to contact her if we would like to do a story and she would help to make it happen. Karen also knows of a good journalist who will find opportunities for us to speak.

Be careful when mentioning that many sufferers suffer from depression and thoughts of suicide.

Be careful when mentioning that many sufferers suffer from depression and thoughts of suicide. The media may sensationalize this and say you are suicidal. Also, if you mention feelings of depression, be aware that your employer may look at this as mental instability. If you have found a miracle cure and the story sells, make sure to say that this cure will not work for all sufferers.

We’re a larger community than we think. There are lots of people who have not been identified or recorded. Sixty years ago, no one heard of Autism, but it has become a very common diagnosis today. Odor disorders may be much more common in years to come, which may be due to genetic disorders. This is another reason to raise awareness so people can make choices on how they want to raise their families.

There’s a lady in the community who is writing a book, not just about her odor, but also about other issues in her life. She’s a brilliant writer, and hopefully someday she’ll be on television discussing her book. Writing our stories for publication is another way of getting noticed by the media.

Summary transcript by MEBO Volunteer

Q & A SESSION

During a Q&A, Rob asks how someone living in a small town would approach the media to get their story told. Karen stated that many articles have been written in women’s magazines, and she feels this is an excellent way of getting the word out. Magazines are placed in doctor’s and dentist’s waiting rooms, and are not usually thrown away. Newspapers, however, are usually discarded. She adds that internet articles are like magazines in that they can be referred to and have more lasting power. In addition, radio interviews are equally as successful.

Feel free to contact Karen at karen@meboresearch.org

---

A EURORDIS and NORD Member Organization