Nyt fra den internationale patientforening 'RLS Association Circle of Leadership'
For at bygge videre på de ideer og den information, der er udvekslet siden sidste års møde i RLS Association Circle of Leadership og for at drøfte, hvordan vi kan bevæge os fremad og tilvejebringe nye initiativer, der kan udbrede kendskabet til RLS, afholdtes et møde i Rom den 11.-12.06.04.
Det var den overordnede hensigt med mødet, at søsætte en formaliseret international undervisnings- og informationskampagne, der skal tiltrække global medieinteresse for Restless Legs.
Kampagnens formål er, at forøge det globale kendskab til RLS ved gennem specifikke medieaktiviteter at informere og hjælpe patienter til at søge medicinsk behandling, såfremt de har RLS-lignende symptomer samt at udbrede kendskabet til Restless Legs.
På længere sigt er målet, at gøre RLS-informationskampagnen til et løbende initiativ med kampagneelementer (målsætninger og temaer), som udvælges blandt forslag fra medlemmerne af RLS Association Circle of Leadership.
Etableringen af en formel international mediekampagne giver den nødvendige styrke til, at kommunikere fælles informationer om Restless Legs ud over alt i verden.
Grundtanken bag RLS-informationskampagnen er, at orientere den brede befolkning og de praktiserende læger om RLS, inklusive den negative virkning sygdommen kan have på patienternes livskvalitet. Herudover skal kampagnen hjælpe patienter og læger til at kommunikere på et fælles sprog for at identificere RLS symptomerne, så patienterne får stillet den korrekte diagnose.
I forbindelse med RLS-informationskampagnen er gruppen af patientforeninger formaliseret under ét navn for at forstørre synligheden af en international enhed med det samme mål - at udbrede kendskabet til sygdommen Restless Legs. Kampagnen introduceres under navnet International RLS Awareness Coalition med et eget logo, der kan bruges på undervisnings-, oplysnings- og pressemateriale.
På mødet blev der tillige planlagt en officiel lancering af begrebet World RLS Awareness Week i perioden den 20.-26. september.
Denne periode er valgt, fordi den svenske neurolog Karl-Axel Ekbom, som beskrev RLS-symptomerne i sin afhandling i 1945 og gav dem betegnelsen 'Restless Legs', blev født den 23. september (1907).
Møderne i RLS Association Circle of Leadership sponsoreres af det amerikanske medicinalfirma GlaxoSmithKline.
Stig Eric Weibel ________________________________________________________________________
AGENDA
International RLS Awareness Coalition 2004 Summit, June 12, 2004
9:00 9:30 Introductions and opening remarks Allan O'Bryan, U.S. RLS Foundation
9:30 10:30 Establishment of the International RLS Awareness Coalition• Background • Mission • Your involvement and support • Chair committee development/nominations • Logo/letterhead • Q&A
10:30 11:30 International RLS Awareness Campaign and 2004 activities Galia Wilson, Edelman Public Relations
11:30 12:00 Local support from GSK: Collaborating with local operating companies Susan Sikora, GlaxoSmithKline
13:00 14:00 Open forum discussion Facilitated by Allan O'Bryan, U.S. RLS Foundation
You are invited to update the Coalition on RLS activities in your market, or pose questions to the group about matters you would like to discuss, such as: RLS awareness obstacles • Disability • Children and RLS • Other?
14:00 17:00 Media & communications training workshop Brenda Ellison, Bell Communication Skills
17:00 17:30 Meeting summary/closing Allan O'Bryan, U.S. RLS Foundation ________________________________________________________________________
Press Release
Global Advocacy Groups Form International Coalition to Combat Restless Legs
International RLS Awareness Coalition Holds First Summit during Annual Movement Disorder Society Meeting
Rome, 14 June 2004 - Advocacy groups from around the world have joined forces to form the International RLS Awareness Coalition to raise awareness of restless legs syndrome (RLS), also known as Ekborn Syndrome, a potentially debilitating neurological movement disorder that can have a profound impact on quality of life. The collaborating organisations met this week during the Movement Disorder Society's 8 th International Congress to discuss their global agenda. The Coalition is the first ever formal global collaboration of patient groups whose members suffer from RLS.
"The Coalition hopes to educate the public about RLS and empower people who suffer from RLS symptoms to seek care from a physician," said Eileen Gill, President of the RLS:UK, co ordinator for the Ekbom Support Group in England and member of the International RLS Awareness Coalition. "We want to reassure patients that their combined symptoms may be attributed to a legitimate physical condition, restless legs syndrome." Eileen has suffered from RLS for more than 30 years.
Eileen founded the Ekbom Support Group in 1988 after a life long bout with RLS. Experiencing her first symptoms as a young child, Eileen always felt an itch inside her legs that she was unable to ease by rubbing. She found that the only way she could relieve the sometimes painful sensations was to get up and walk about. Little was known about the condition and her physicians were of little help. After undergoing numerous examinations including electrical conduction tests and MR1 brain scans, to no avail, Eileen began extensively researching her condition and found she was suffering from a condition known as RLS. Eileen suffers from a form of RLS known as primary, or familial, RLS which is thought to have a genetic link. Her mother and son also suffer from the condition. Now she is being treated for her symptoms and feel "born again." As founder of the Ekbom Support Group, Eileen published her first newsletter in 1990 and to date has received over 20,000 requests for information.
Founding member organisations include advocate groups from:
Australia, Austria, Canada, Denmark, England, Finland, France, Germany, The Netherlands, Italy, New Zealand, Switzerland, Sweden and the United States.
Additional RLS advocacy groups have recently joined in the effort. This meeting is the second of the collaborating advocate groups; they initially met last year to discuss global RLS issues, share ideas and the formation of a unified global coalition. In upcoming months the new coalition will initiate RLS education and awareness activities around the world. The Coalition wants patients to talk to their doctor about their RLS symptoms to get an accurate diagnosis.
"It is a great honour to be a part of this global collaboration to raise awareness about IRLS," said Allan O'Bryan, Associate Director of the RLS Foundation in the United States. "This condition has such a profound negative impact on a patient's quality of life and we want patients to know we're here to help."
The International RLS Awareness Coalition
The International RLS Awareness Coalition is the first collaboration of leading patient groups from 14 countries whose members suffer from the complicated and distressing condition known as restless legs syndrome (RLS). The mission of the Coalition is to raise global awareness about RLS by informing and empowering patients to seek medical care and to raise the profile of RLS as a valid health condition, which can have a profound impact on a patient's quality of life. In addition to their collaborative effort, each International RLS Awareness Coalition member organization serves as an independent advocacy group and local resource for those seeking information about RLS. ________________________________________________________________________
For at bygge videre på de ideer og den information, der er udvekslet siden sidste års møde i RLS Association Circle of Leadership og for at drøfte, hvordan vi kan bevæge os fremad og tilvejebringe nye initiativer, der kan udbrede kendskabet til RLS, afholdtes et møde i Rom den 11.-12.06.04.
Rome, 14 June 2004 - Advocacy groups from around the world have joined forces to form the International RLS Awareness Coalition to raise awareness of restless legs syndrome (RLS), also known as Ekborn Syndrome, a potentially debilitating neurological movement disorder that can have a profound impact on quality of life. The collaborating organisations met this week during the Movement Disorder Society's 8 th International Congress to discuss their global agenda. The Coalition is the first ever formal global collaboration of patient groups whose members suffer from RLS.
