The GRDO was incorporated in 1988 and its first achievement was to successfully lobby for a dedicated national centre for medical genetics which was established at Our Lady’s Hospital Crumlin in 1994.
The objectives of the GRDO are:

• To voice and promote views of the member organisations on issues of common concern.
• To be a strong and united voice that will increase public awareness of genetic and other rare disorders.
• To promote further development of genetic services in Ireland .
• To lobby for the availability of adequate care services in Ireland .
• To promote equality of educational and employment opportunities.
• To facilitate the exchange of information between member organisations
• To represent the needs of its member organisation to the statutory and other bodies.
• To establish a liaison with geneticists and other relevant specialists nationally and internationally to help GRDO achieve its aims and objectives.
• To encourage scientific research in the area of genetics and other rare disorders

GRDO is represented on the boards of the following organisations:

Disability Federation of Ireland DFI www.disability-federation.ie

European Rare Disorders Organisation EURORDISwww.eurordis.org

European Platform for Patient Organisations, Science, and Industry, EPPOSI www.epposi.org

European Patient Forum Policy Advisory Board www.eu-patient.eu

Irish Platform for Patient Organisations, Science and Industry IPPOSI www.ipposi.ie

Medical Research Charities Group MRCG www.mrcg.ie

The latest issue of their newsletter is available at the following link:

http://www.grdo.ie/pdfs/Rare%20Diseases%20News%20Vol1.%20Iss3.pdf

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A Myeloma Patient, Family and Friends Information Day will be held on Tuesday 26th June as part of Myeloma Awareness Week 2012.

The Information Day will take place in the Midland Regional Hospital, Tullamore, Co Offaly
from 11.30am – 4.30pm.

Speakers include: Dr G Crotty, Dr Perera, Louise Keegan (CNS), Mary Kelly (ANP), Claire Donnelly (physiotherapist) John O’ Hara and Joe O’Brien (patients living with Myeloma)

Topics include: Understanding Myeloma, Treatment Options, Managing Side Effects, Move to Fight Cancer, Living with Myeloma, Myeloma and Bone Disease and  Myeloma and your Kidneys. There will be plenty of opportunities for questions.

Please Contact Mary Kelly on 087 7804007 or email maryb.kelly@hse.ie for further details and to register.

All are welcome to this event which is free of charge.

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Myeloma Awareness Week runs from June 21 – June 28, 2012.

Please spread the word about myeloma with friends and family, on websites, boards and on social media. We are asking you to share information about this disease with just one person. Request one of our leaflets on Myeloma or refer people to this website.

If you have an event happening then please let us know and we will highlight it here. Email us to mymyeloma@gmail.com

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Intro:

“Last week marked the six-year anniversary of my diagnosis of multiple myeloma.  The occasion was marked, not by a celebration, but by a trip to Boston to talk with Dr. Ken Anderson about the next step in my treatment.

“The last six years have been filled with ups and downs.

“As I am always reminded, myeloma is a very heterogeneous disease and behaves differently for everyone.  Some people seem to have periods of very long responses to treatment and periods where the disease is well controlled.   It seems that was never really the case for me.”

To read the rest of the article please click on the link below:

Arnie’s Rebounding World: Reflecting Back, Looking Forward

ENDS

It is good to see Myeloma being covered again by the Irish Times Health Supplement.

To read Regina’s myeloma story click on the link below:

Myeloma story in Irish Times of 13 March 2012

ENDS

Tomorrow, February 29th is National Rare Disease Day and the Joint Committee on Health and Children will focus on rare diseases in Ireland when it meets with a number of groups dealing with rare diseases tomorrow, Wednesday, 29th February.

To mark National Rare Disease Day, Genetic and Rare Disorders Organisation; Rare Diseases Taskforce; Rett Syndrome Ireland; and 1p36 Deletion Syndrome Ireland will address the Committee.

Rare Disease Day is being held on 29th February this year and is an annual, awareness-raising event co-ordinated by EURORDIS, a non-governmental patient driven alliance of patient organisations, at the international level and National Alliances of Patient Organisations at the national level.

Committee Chairman, Jerry Buttimer TD said: “Rare diseases are life threatening or chronic debilitating conditions affecting no more than 5 in 10,000 people. Between 5,000 and 8,000 rare diseases have been described, affecting about 6-8% of the population in the course of their lives. Approximately 80% of rare diseases have a genetic origin and the life expectancy of patients with rare diseases is significantly reduced. Many of these conditions are complex, severe and debilitating.

At present, scientific knowledge on rare diseases is limited – less than 150 of the known rare diseases have a marketed drug treatment.

Our meeting will enable committee members to get an in-depth briefing on the issue in Ireland and provide the groups dealing with various rare diseases with an opportunity to outline the key issues they face in terms of prevention, detection and treatment of rare diseases, access to appropriate medication and the identification of appropriate centres of expertise for rare diseases which is a key priority.”

The meeting takes place tomorrow, Wednesday, 29th February, at 1.45pm in Committee Room 1, LH 2000. Committee proceedings can be followed live at:http://bit.ly/24YmPI

The meeting will also be televised live on the UPC television network, Channel 801.

For further information please contact:

Ciaran Brennan,
Houses of the Oireachtas,
Communications Unit,
Leinster House,
Dublin 2

P: +3531 618 3903
M: 086-0496518
F: +3531 618 4551

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Committee Membership:

Deputies

Jerry Buttimer, Fine Gael
Catherine Byrne, Fine Gael
Michael Colreavy, Sinn Fein
Ciara Conway, Labour Party
Regina Doherty, Fine Gael
Robert Dowds, Labour Party
Peter Fitzpatrick, Fine Gael
Seamus Healy, Independent
Derek Keating, Fine Gael
Billy Kelleher, Fine Fail
Eamonn Maloney, Labour Party
Charlie McConalogue, Fianna Fail
Mattie McGrath, Independent
Denis Naughten, Independent
Caoimhghín Ó Caoláin, Sinn Fein

Senators

Colm Burke, Fine Gael
John Crown, Independent
David Cullinane, Sine Fein
John Gilroy, Labour Party
Imelda Henry, Fine Gael
Marc Mac Sharry, Fine Fail
Jillian Van Turnhout, Independent

Myeloma falls into the category of rare diseases so we will watch the outcomes and discussions and report on anything of relevance after the meeting.

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Daffodil Day is one of the big fundraising days each year for the Irish Cancer Society. This year it falls on Friday March 23^rd. Look out for fundraising events in your local area. Better still – you can fundraise for Daffodil Day within your club, business, organisation or community by selling Daffodil merchandise or by running your own special event.

All the information about Daffodil Day and how you can get involved is available on the Irish Cancer Society website –www.cancer.ie

The Irish Cancer Society provides Daffodil Centres in Irish hospitals. Daffodil Centres provide cancer information, support and advice in local hospitals. The centres are an extension of the Irish Cancer Society’s Cancer Information Service.

With the Daffodil Centres the ICS aims to provide a wide range of information locallyto anyone affected by or concerned about cancer.

In Tallaght recently we noticed a new Daffodil Centre which has sprung up and is a very welcome sight indeed.

MyMyeloma is currently in the process of ensuring that Daffodil Centres have some of our Myeloma leaflets.

Let us know if you have seen a Daffodil Centre or used their services.

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The Myeloma Beacon website which is based in the USA is a wonderfully resourced website on all things Myeloma. They have recently added a new section to the site where they have collected all the blogs from around the world in which people are writing or blogging about myeloma.

One of the blogs they have featured belongs to Irish Myeloma patient Brenda Drumm. Another blog from closer to home is one by Sean Tiernan about his life with myeloma.

Have a read of some of them as they are probably covering a lot of what you have been through, are going through or are feeling! Leave a comment or why not start a blog of your own?

Here’s the link to the blogs mentioned:

http://www.myelomabeacon.com/category/links/blogs/

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The updated submission timeline means that pomalidomide could be approved for use in the United States and in Europe by the end of this year.

Celgene’s announcement was made in a company earnings report.

Pomalidomide, which belongs to the same class of drugs as thalidomide (Thalomid) and Revlimid (lena­lidomide), is being developed by Celgene (NASDAQ: CELG) for the treatment of multiple myeloma and myelofibrosis.

Results from the latest clinical trials involving pomalidomide were presented at the American Society of Hematology meeting last month (see related Beacon news).  Physicians and industry analysts have responded positively to the drug’s performance, particularly among patients previously treated with both Revlimid and Velcade (bortezomib).

Under the FDA’s standard review process, the agency must decide whether to approve a drug within 10 months of the time the drug is submitted for review.  However, the FDA can grant priority review to drugs that offer significant advances in treatment, particularly for diseases in which there are inadequate treatment options. If the FDA grants pomalidomide priority review, the agency would need to complete its review of the drug within six months.

Thus, if the FDA approves pomalidomide based on the application Celgene submits this quarter, the drug could be available for use in the U.S. by the last quarter of 2012 or early 2013.

In Europe, the EMA must review drug applications within 210 days of submission.  If, however, a drug is granted an accelerated assessment due to therapeutic innovation or because it is of significant interest to the public health, the EMA must review the application within 150 days.

These timelines mean that, if the EMA approves pomalidomide based on the application Celgene submits during the first half of this year, the drug could be available for use in Europe by the end of 2012 or the first quarter of 2013.

An EMA approval of pomalidomide would allow the drug to be marketed in all 27 countries of the European Union and in Norway, Iceland, and Liechtenstein.

Along with carfilzomib – which works similarly to Velcade – pomalidomide is considered one of the most promising new myeloma treatments that could be approved by the FDA in the next few years.

For the full earnings report, see the Celgene website.