EFAPH

25/11/2021

THE BOARD AT EFAPH:
The following shows the board at EFAPH for the period 2021-2023.

14/09/2021

EFAPH ONLINE AGM
The online EFAPH AGM will take place at 23 October 15:30-18:00 CET via Zoom. There will be 4-5 scientific topics presented by the Joint Scientific Committee. The regular posts will also include Activity Report, Financial Report and Board Election.

Invitations will be sent all European associations and their board members. A full agenda will be presented soon.

25/06/2021

WHAT DO EFAPH DO?

* Participation in other European umbrella organisations for common influence in European medical political work and for interdisciplinary exchange of experience with other patient organisations throughout Europe

* Raising awareness to the European people in general about HH, and the same to healthcare workers and health politicians all over Europe

* Helping their member states to raise awareness in their countries

* Facilitating exchange of experience between member nations

* Participate in European bodies for common guidelines for diagnosis and treatment

* Helping other European countries to establish formal groups or organisations for HH patients

* Trying to raise funding for EFAPH – an everlasting struggle!

25/06/2021

JOINT EFAPH/HI SCIENTIFIC COMMITTEE:
In 2020 we joined our forces in a new worldwide scientific committee for work with haemochromatosis and iron metabolism. We are really happy that this committee now is working as planned, and there is already several exiting ongoing projects in different stages we hope to present results from in the coming months.
These are the current members of the committee:

25/06/2021

THE BOARD AF EFAPH:
The following shows the board at EFAPH for the period 2019-2021.

15/06/2021

COUNTRY SPECIFIC HH PAGES ON FACEBOOK: Many of the countries with widespread genetic haemochromatosis have a national page or even some regional pages as well. We have looked up most of these pages in order to give you an overview.

In addition to the pages presented below there are also some pages not linked to a specific country and one or more Facebook Groups per country for discussions.

14/06/2021

PATIENT'S NEEDS SURVEY: Fantastic results from our Patient's Needs Survey. A staggering 1,770 people participated and gave their valuable input to this large worldwide Patient's Needs Survey. People from 22 countries answered and this shows a lot of engagement and dedication to the cause.

Professor Mayka Sánchez Fernández (with helpers) has now compiled the first report from the survey. The 115 pages of results from the survey has been published to all EFAPH member organisations.

The next step will be to plan to publish the results and findings in a journal suited for this kind of survey. EFAPH will try to make it as an Open Access publication. The cost is however 2,000 euro so we might need to have a fundraiser for the purpose.

14/06/2021

EFAPH WEB PAGE: Our web page http://efaph.eu/ has been down for a long period due to some technical challenges. The page is now up and running again and will in the coming weeks be updated with the latest news.

EFAPH - European Federation Haemochromatosis EFAPH