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Rare Disease Day 2017
28 February 2017 marks the tenth international Rare Disease Day coordinated by EURORDIS. On and aeound this day hundreds of patient organisations from countries and regions all over the world will hold awareness-raising activities based on the theme of research. The Rare Disease Day 2017 slogan is ’With research, possibilities are limitless‘.
Rare Disease Day 2017 is also an opportunity to recognise the crucial role that patients play in research.
Patient involvement in research has resulted in more research, which is better targeted to the needs of patients. Patients no longer solely reap the benefits of research; they are empowered and valued partners from the beginning to the end of the research process. Patients:
-Advocate for research on a specific disease or across diseases. They know where research is needed and work to influence research bodies and companies to prioritise these areas in their research.
-Fund research. Individuals or patient organisations such as the AFM-Téléthon often raise money for clinical trials or research projects, on their own or in partnership with private funding iniciatives.
-Partner in research projects and are included in the governance of research.
-Participate as subjects in clinical trials and also in the design of clinical trials. They therefore help to ensure that the development of a medicine takes into account their real needs, so that the patient perspective is not overlooked.
Treatment of Haemochromatosis Arthropathy
An international group of rheumatologists – founded in June 2016 with the aim to proceed in the research of haemochromatosis Arthropathy – publishs a first paper for the help pf HH-Patients. The project was iniciated at the EFAPH AGM in Cologne, October 2015.
Advice for patients from the Haemochromatosis Research Iniciative (HARI) (download)
European Iron Club Annual Meeting April 7-10, 2016 | Innsbruck
Scientific program of the 2016 meeting is available for download here.
Hemo News 4
According to the EFAPH General Secretary, Dr. Françoise Courtois “2015 has been a very important year. The AGM in Cologne was wonderfully organized by the German HH-Association HVD. New and noteworthy: the active participation of Haemochromatosis International (worldwide HH federation). The scientific sessions have been very informative and generated several collaborative projects. The Lisbon October meeting has been a key date in closing a tight relationship with EHA (EU Hematology Association) to implement a ERN (EU Reference Network) for Rare Hematological Diseases: the beginning of an intense and complex “love story”!”
A Highly Successful Concert
A charity concert was organised in Paris on 23rd November 2015 to raise funds for EFAPH, with the internationally renowed pianist Yves Henry and the young violinist virtuoso Hildegarde Fesneau. After a masterclass around a Mazurka of F. Chopin, the two concert performers interpreted a Sonata of W. A. Mozart followed by a “whim” of P. de Sarasate. The concert was splendidly ended by several romantic opuses of F. Chopin interpreted by Yves Henry whose talent, culture and kindness made a conquest of the public. An exceptional evening!
Irish Haemochromatosis Association| Charity Heroes | Margaret Mullett
Margaret Mullet had dedicated the last thirteen years of her life raising awareness about the blood disorder Iron overload (Haemochromatosis) which is prevalent in Ireland and is very treatable once diagnosed. The number of patients now diagnosed and treated with the disorder has increased vastly since she has become involved in leading awareness for the disorder. She has advocated tirelessly for patients with medical personnel to ensure early diagnosis and access to treatment; with health and life insurance providers against discrimination of iron overload patients and with various Ministers for Health to seek better resources in addressing this disorder.
We would really appreciate if you would share the following link with your friends, family and colleagues and ask them to VOTE for Margaret. You can VOTE for MARGARET once a day until 4 December. http://2015.bettertogether.ie/charity-hero/margaret-mullett
They welcome membership from any Haemochromatosis Association, national or otherwise. For further information about the Haemochromatosis International please visit the website haemochromatosis-international.org
EFAPH was represented by Françoise Courtois and Graça Porto. EFAPH presentation is available for download
DG Health and Food Safety has organised the “2nd conference on European Reference Networks (ERN)” on 8-9 October 2015 in Lisbon, Portugal.
This 2nd conference, hosted by the Ministry of Health of Portugal, was included as an event of the Luxembourgish EU Presidency. The conference built on the success of the 1st conference on European Reference Networks, which took place in Brussels June 23rd 2014.
The conference focused on the implementation of ERN under the Directive 2011/24/EU with the goal to support interested highly specialised networks and centres of expertise across the EU already preparing for the call for ERN in early 2016. Further the draft of the assessment manual and toolbox to be used for the technical assessment of the Network proposals was presented.
Haemochromatosis & Blood Donation
This project is aimed to: evaluate the current practices of blood donation from HH patients in different countries/regions from the perspective of patients or association members (as opposed to the published Blood Banks’ perspectives); and understand how strongly the different policies regarding the acceptance or not of HH subjects as volunteer blood donors may affect them or affect the effectiveness of their preventive treatment. For those purposes, an online survey was designed and validated and it’s now online.
Financial support is partially provided by EFS (French Blood Establishment)
Hemo News 3
In the third issue of EFAPH’s newsletter the emphasis has been put, as usual, on the highlights from EFAPH’s members Associations, the 2014 Verona AGM. Save the Date for the coming 2015 (Cologne, Germany) AGM. The multinational (European) dimension is also stressed with EFAPH’s key projects: the Blood Donation Survey, the Arthropathy Taskforce and the internationalization of the HH GPs’awareness project. Last but not least, a formal Medical and Scientific Advances Section has been developed, borrowing from some National Members’s litterature and from outside sources.
Raise and Join your Hands to show Solidarity with Living with a Rare Disease!
Whether you are with your family at home, 10 people in an office, 100 people at a conference or 1000 people at a public gathering: Raise and Join Hands to show your solidarity with people living with a rare disease around the world!
Help us show that we are all mobilised for people living with rare diseases and driven by the same objectives.
How can you participate?
Take your picture, joining and raising your hands and send it to us! It really is that simple. This symbolic gesture can be done before the Day or part of the activities you have already planned on the Day.
Record the event with a photo and send it us via our website. You can become part of the campaign and view your photo in our specific Flickr Photostream.
Remember to specify the location and the country where the photo was taken!
Rare Disease Day: February 28th 2015
When? The last day of February every year.
What? Rare Disease Day is to raise awareness for rare diseases and their impact on the lives of patients and families.
Where? Thousands of events around the world! EURORDIS organises the international campaign and National Alliances and other rare disease patient organisations hold events locally.
Who? For everyone! The Rare Disease Day campaign targets the general public and policy makers and anyone is welcome to join: patients and their families, patients organisations, health professionals, researchers drug developers, public health authorities – the more, the better!
How? Since the Rare Disease Day was created by EURORDIS in 2008, thousands of awareness – raising activities have taken place throughout the world reaching hundreds of thousands of people and generating local and international media attention.
On rarediseaseday.org you can find information about the thousands of events happening around the world to build awareness for people living with a rare disease and their families.
Save the date!
Next Annual General Meeting will take place in Cologne, Germany from Friday October 16th to Saturday October 17th , 2015 .
Scoop about Haemochromatosis on the Route du Rhum transatlantic sailing contest
Erwan Le Roux winner of the Multi50 category onboard FenêtréA-Cardinal.
On the photograph, quite in evidence, the logo of the European Federation of Associations of Patients with Haemochromatosis-EFAPH.
Three days after Loïc Peyron, on Thursday, 13th. of November, Erwan Le Roux – FenêtréA-Cardinal – was the winner of the Multi50 category in the Route du Rhum sailing race. The standalone Breton crossed over the Atlantic in eleven days, five hours, thirteen minutes and fifty five seconds”. “He improved by twelve hours and fifteen minutes the reference time for Muli50 (15,24 meters multihulls) set in 2006 by Franck-Yves Escoffier (11d,17h and 28s)”. “The fight has been tough with his main rival Lalou Roucayrol (Arquema-Région-Aquitaine) who was due to reach Pointe-à-Pitre during the night from Thursday to Friday”
Source: Internet Le Monde, November 14th. 2014
The European and French Haemochromatosis Federations as well as the associated regions/countries hail Erwan’s victory and congratulate him wholeheartedly.
We are proud to count Erwan as one of our embassaders. Thanks to him thousands of people have been made aware of haemochromatosis. The early diagnosis of the disease is necessary in order to avoid severe complcations (joints pains, heart problems, diabetes, cirrhosis…)
Source: Joël Demares, Chair Association Hémochromatose Ouest (France)
Haemochromatosis and Route du Rhum
A magical transatlantic crossover
Hundreds of thousands of onlookers converged in Saint Malo (French Brittany) to watch the departure of the 10th Route du Rhum.
91 standalone skippers sailed off on November 2 to reach Point-à-Pitre (French Bermudas). This year AHO and FFAMH, members of the European Federation of Associations of Patients with Haemochromatosis (EFAPH) are closely following this remarkable sport event: skipper Erwan Le Roux sailed off onboard his trimaran FenêtréA-Cardinal, displaying the EFAPH logo on its main sail.
This partnership was initiated when Françoise Courtois, EFAPH Secretary General, met Erwan Le Roux in October on occasion of the ProAm Sail and Golf taking place at Cissé-Blossac (French Brittany). Erwan had spontaneously volunteered to support EFAPH in the latter’s efforts to publicize haemochromatosis.
Let us follow proudly Erwan’s endeavor and support him until he reaches Point-à-Pitre!
The 10th Annual General Meeting of EFAPH takes place Sept. 14th 2014 in Verona, Italy in the frame of the EIC meeting. http://european-iron-club.fr/
Am 17. Februar wurde der Verein “Hämochromatose Schweiz” gegründet. Wir gratulieren der Vorsitzenden Gerda Horn und Ihren Mitstreitern.
Weitere Information unter www.sh-haemochromatose.ch.
EFAPH warmly welcomes two new members: from Denmark
The Danish interest group for Haemochromatosis
For more information visit: www.haemokromatose.dk
and from Belgium
Haemochromatose Vereniging Vlaanderen HVV
For more information visit www.haemochromatose.be.
The second EFAPH Newsletter is available. HEMO o NEWS 2 is ready for download in an English and French version.
Le samedi 23 novembre 2013 Madame Dr. Françoise Courtois, Secrétaire Générale de la Fédération Européenne des Associations de Malades de l’Hémochromatose EFAPH a reçu l’insigne de Chevalier dans l’ordre national de la Légion d’honneur au Château du Val. Féliciations!
On Friday, October 4th our friends of the Cicé Blossac Golf in Bruz near Rennes, France organize for the third time a tombola for the benefit of EFAPH. Thank you very much!
Invitation and Tombola-Announcement (download)
The 2nd Meeting of the International Alliance of Haemochromatosis Associations IAHA and the 9th Annual General Meeting 2013 of EFAPH takes place April 19th, 2013 in London, UK.
(Agenda for download)
Jeudi 21 février 2013 á Paris:
Un Récital de piano par l’artiste internationale Anne Queffelec au profit d’EFAPH – Salle Cortot (Paris 17ème).
Thursday, February 21st 2013 in Paris:
Extraordinary piano concert with the international artist Anne Queffelec for the benefit of EFAPH.
For more information and reservation see invitation (download) or contact Dr. Françoise Courtois, EFAPH via Email firstname.lastname@example.org
The first EFAPH Newsletter HEMO o NEWS is available!
The Bulletin Nr.1 is ready for download in an English and French Version.
(Download HEMO NEWS English), (Download HEMO NEWS Français)
The Annual General Meeting 2012 of EFAPH takes place August 31st/ Sept. 1st 2012
in Rennes France. (Download)
European Haemochromatosis Awareness Day June 7th 2012
Haemochromatosis is a genetic iron overload disease which could lead to death by liver cirrhosis and carcinoma. Early symptoms are tiredness and joint pain. In case of early diagnosis organ damage is highly preventable. To improve the awareness several national associations are organizing information events in their countries around June 7th 2012. Read more…
EFAPH is delighted to present its work, projects and requests at a lunch-debate in the EU Parliament on Sept. 20th 2011.
EFAPH heißt die Schweizer Hämochromatose-Selbsthilfegruppe als neues Mitglied herzlich willkommen!
EFAPH cordially welcomes the new member from Switzerland!
EFAPH warmly welcomes the new member from Italy:
Associazione per lo Studio dell’Emocromatosi e delle Malattie da Sovraccarico di Ferro
Find more information about our new member on: www.emocromatosi.it