Find patient support groups

 

This AS Life isn't the only place to get good advice about living with AS. There are various AS charities and support groups out there – both online and across the globe.

Find what's available for you from the list below.

INTERNATIONAL

ANKYLOSING SPONDYLITIS INTERNATIONAL FEDERATION (ASIF)

http://www.asif.info/en/

ASIF was formed in 1988 to increase public awareness of AS and spread knowledge of the disease around the world. It’s an international umbrella organization of over 35 national member societies (including many listed here). ASIF helps foster cooperation between its member societies, helping them share information and experience. It also has a more practical role in fostering international research projects, plus making contact with spondylitis patients in countries that don’t yet have an AS society.

BELGIUM

VLAAMSE VERENIGING VOOR SPONDYLOARTRITIS VZW

+32 (0) 472 35 20 27

http://spondylitis.be

Email for general enquiries: voorzitter@spondylitis.be

The patient-run Society for Flemish Spondyloarthritis (SpA, including AS or Bechterew) patients (VVSA vzw) informs, supports and connects SpA patients and their relatives in the Dutch speaking part of Belgium.

Up-to-date information on different aspects of the disease and it’s repercussion on multiple aspects of everyday life is supplied through the website, through a quarterly magazine and brochures, and through seminars on specific topics. Since the society was founded in 1983 (at that time still calling herself a Bechterew society), stimulating patients to persevere in regular exercise has been one of our primary concerns.

To achieve this, a network of weekly exercise classes was set up so that any of our 600 members would not be more than 30 km away from an exercise group. For those who cannot attend these classes (or are reluctant to), a guidebook is available in which each exercise is presented in 3 variations, thus allowing for the different degrees of limitation that exist between patients.

Introductory “classes” for new patients, answering most of the questions that newly-diagnosed patients are faced with, are planned to start in 2016.

To keep up with the evolution in medical practice, the society has decided to drop Bechterew  from her name,  the term having become too narrow. The name change has recently been approved by the general assembly (end of February 2016), and from now on the society proudly presents herself as Vlaamse Vereniging voor SpondyloArtritis vzw (Society for Spondyloarthritis), thereby working for both patients with or without radiographic signs. 

BULGARIA

BULGARIAN ANKYLOSING SPONDYLITIS PATIENT SOCIETY 

+359 87 895 7442

http://spondylitisbg.org/

The Bulgarian Ankylosing Spondylitis Patient Society is a non-governmental organization with non-commercial activities registered under decision No 666/2009  from 23.11.2009г. The society is operating in the public sector and represents the people with ankylosing spondylitis in Bulgaria.

Become a member of our society if you want to meet people with ankylosing spondylitis, to share experience and to help each other overcome the difficulties and challenges. 

CANADA

CANADIAN SPONDYLITIS ASSOCIATION (CSA)

1 416 694-5493

http://www.spondylitis.ca/

Set up and run by volunteers, CSA pioneers greater information not just for patients with ankylosing spondylitis but also for those with psoriatic arthritis and associated spondyloarthritis diseases in Canada. CSA encourage conversation via their social channels and have a regular newsletter called ‘TalkBack’. Membership is completely free.

CYPRUS

CYPRUS LEAGUE AGAINST RHEUMATISM

 

http://rheumatism.org.cy/

The Cyprus League Against Rheumatism is a charitable, non-governmental, non-profit association whose main objective to improve quality of life for people with rheumatic conditions in Cyprus. It is a very active group locally, well connected with similar affiliates in Europe.

Our vision is a society in which the prevention, treatment and rehabilitation of rheumatic diseases is continuous and to a high standard: so that quality of life is improved for those affected. We believe these values should be a high priority to the Government and other organizations, as well as the media and general public.

People with rheumatic conditions have the right to a life lived with independence, dignity and respect from all – and the possibility to participate fully in all aspects of daily life.

Our main objectives:

  • Free healthcare/physiotherapy for people with rheumatic diseases
  • Mental and psychosocial support, plus patient education for those affected
  • Development of scientific research centers, rheumatology clinics, physiotherapists centers and rehabilitation centers
  • Increased public awareness of the burden of rheumatic diseases

CZECH REPUBLIC

KLUB BECHTĚREVIKŮ

+32 (0) 472 35 20 27

http://www.klub-bechtereviku.cz/

Klub bechtěreviků is an association of patients and others interested in improving the living conditions of people with AS.

Our main goals are:

  • To ensure an equal and full life for people with AS.
  • To create a regional network of Klub bechtěreviků so that every Czech citizen can benefit from our activities.
  • To collaborate with similar organisations both within the Czech Republic and internationally.

Our services include a regular Klub bechtěreviků newsletter, rehabilitation trips, plus exercise and swimming sessions. We also host regular lectures and discussions with doctors.

FRANCE

ASSOCIATION FRANÇAISE DE LUTTE ANTI RHUMATISME (AFLAR)

+ 33 (0)1 45 80 30 00

http://www.aflar.org/

AFLAR is the only association dedicated to all the musculoskeletal disorders. Founded in 1928, it has been a recognized charity since 1937. It’s an umbrella organization of affiliated associations, including the AFS (Association France Spondylarthrites).

For over 80 years, AFLAR has been striving to achieve the major objectives in the fight against rheumatic and musculoskeletal diseases (RMDs):

  • Raise awareness of the impact of RMDs
  • Increase knowledge of RMDs: their care, prevention and the latest research developments
  • Improve the quality of care by spreading knowledge and ensuring health professional training
  • Help patients better live with their disease and to be part of the treatment process
  • Make patients involved in their own care and involve them in health policy consultation
  • Allow for equal access to care for each and every patient with an RMD
  • Make governments and decision-makers fully understand and realise the human, social and economic burden of RMDs
  • Improve social care for RMDs and the resources for their prevention and research

AFLAR represents all types of RMDs – including AS – as well as many types of treatments, professionals and institutions (including several patient associations). In total, AFLAR’s membership is over 165,000 (although membership isn’t necessary to use our services).

HUNGARY

MAGYAR BECHTEREWESEK EGYESÜLETE (MBOE)

 

http://www.bechterewes.hu/

The Hungarian Bechterew Association (MBOE) was founded in 2012 with the mission to raise disease awareness associated with ankylosing spondylitis, also known as Bechterew disease, among patients and their families, healthcare professionals  and society.

MBOE monitors both the international and national status of AS patients, and makes efforts to mitigate the negative consequences of the disease by assisting in the reintegration of patients into society. It also supports the operation of patient associations, clubs and other self-organizing patient groups working for AS patients in Hungary. 

MBOE facilitates and coordinates the establishment and activities of these affiliated working groups, as well as AS disease associations and academic organizations.

It helps sufferers and their families in obtaining necessary information in the form of: education, lectures, seminars, courses, exhibitions, publications and organizing scientific events. MBOE also operates a Facebook group.

MBOE represents the Hungarian patients in international organizations, promoting the cooperation with different social organizations working to improve Bechterew patients’ lives in Hungary.

IRELAND

ANKYLOSING SPONDYLITIS ASSOCIATION OF IRELAND (ASAI)

1890 252 846

http://www.ankylosing-spondylitis.ie/

ASAI focus on supplying information and support in all aspects of AS, for patients, medical professionals and the general public. The website has a great breadth of information on AS for those who are affected by AS - patients, their families and friends. It also has information booklets, a smartphone app and advice on posture, sleep and fatigue. ASAI supports and aids research into AS.

ITALY

ASSOCIAZIONE PERSONE CON MALATTIE REUMATICHE (APMAR)

+39 800 984 712 Toll Free Number

+39 0832 520165 Main Office

Email for general enquiries info@apmar.it or a.carluccio@apmar.it

http://www.apmar.it/

The purposes of APMAR are many, including awareness around rare rheumatic diseases, plus the treatment and prevention of (and rehabilitation within) these conditions. The primary objective of APMAR NPO is to argue for these conditions to find their proper dignity and attention with both the public and politicians. APMAR actively collaborates with European Associations for Patients with Rheumatic Diseases. Please visit our website here.

JAPAN

JAPAN ANKYLOSING SPONDYLITIS CLUB (JASC)

http://www5b.biglobe.ne.jp/
~asweb/tomonokai/JASC.html/

AS WEB is operated by Nihon AS Tomono-kai, a group of ankylosing spondylitis patients, patients’ families and support members founded in 1991.

The group aims to:

  •  Promote friendship among its members
  •  Learn and understand the disease
  • Contribute to the development of new treatments, establishment of welfare and raising of AS awareness  in Japanese society.

 

KOREA

KOREAN ORGANIZATION OF ANKYLOSING SPONDYLITIS (KOAS)

www.koas.org

Email for general enquiries cybertv@nate.com

The Korean Organization of Ankylosing Spondylitis (KOAS) was founded in 1998. It advocates AS patient rights and supports AS patients and families by providing education on optimal treatment and disease management in Korea.

With 20,000 members and 18 medical advisory board members, KOAS plays a role as a key patient group for Korean AS patients, fighting to improve patients’ access to treatments and the information they need. Its website is a community where patients share information and experiences living with AS and support each other as a peer group. Visit the KOAS website for more information (www.koas.org).

Our support includes:

- AS patient annual meetings

- Small group meetings

- Exercise classes

- Exercise educational CD

- Education video

- Disease awareness activities

- Patient treatment support program

- Advocacy for enhancing accessibility 

NETHERLANDS

STICHTING BECHTEREW IN BEWEGING

+31 (0)10 22 33 725

http://www.stichting-bechterew.nl/

The Spondylitis in Motion Foundation is an organization, active since 2004, for people with ankylosing spondylitis. It consists of a board of six members who play an important role in the planning and actions of this group of patients. A professional team of medical advisors supports the Spondylitis in Motion Foundation in all its activities.

Physical motion is essential in order to avoid stiffening of the spinal column. Discipline and exercise on a regular basis is very important in this: through exercise and physical motion during active and inactive periods of the disease, the progression of the disease can be slowed. Therefore, the Spondylitis in Motion foundation organizes national and international events to promote physical exercise. Aside from the fact that exercise is very important, it is also important to have mutual contact between patients. Joining each other in sports and exchanging experiences is very appreciated in this group.

The Spondylitis in Motion Foundation also provides information by:

  • An extensive website (including an online shop)
  • An online AS symptom tracker
  • A digital newsletter
  • A digital forum for questions
  • National presentations
  • Participation in meetings and other activities

norway

NORWAY

SPONDYLOARTRITTFORBUNDET NORGE (SpAfo Norge)

+47 400 85 106

SpAfo Hjelper Deg! +47 412 04 200 – Hotline

http://www.spondylitten.no

The Spondylitis Association of Norway (SpAfo Norge) is set up and run by volunteers. The association gives information and help to patients and caregivers with any form for spondyloarthritis; like ankylosing spondylitis, psoriatic arthritis, Crohn’s disease, ulcerous colitis, reactive arthritis, undifferentiated arthritis and spondyloarthritis in children.

The organization is built upon the experience through more than three decades of patient advocacy work in Norway. There are members from all over the country.

The association believes that knowledge is power and want to bring this to the AS community, so patients can have better quality of life. Its goal is also to raise awareness for AS in the general public, among health professionals and politicians.

A member magazine ‘Spondylitten’ is produced four times a year, with articles about rheumatology research, medication, treatment, patient rights, work life and how to live better with a chronic disease.

The website www.spondylitten.no also provides news and thorough information about all the spondyloarthritis diagnoses and how to live well with lifelong diseases like these.

You can find out more here:

ŸSpondylitten web page – Magazine for members, next of kin and health professionals

http://www.spondylitten.no/spondylitten/

ŸSpAfo Hjelper Deg! – Patient advocacy helpline on telephone and e-mail

http://www.spondylitten.no/spafo-hjelper-deg/

ŸSpondylitten Facebook page

https://www.facebook.com/Spondylitten/

ŸOur all-volunteer board

http://www.spondylitten.no/kontakt-oss/om-spafo-norge/

SPAIN

COORDINADORA ESPAÑOLA DE ASOCIACIONES DE ESPONDILOARTRITIS (CEADE)

+31 91 697 60 46

http://www.espondilitis.es

With 21 local branches across Spain, CEADE strives to work collaboratively: helping to fully integrate people with AS into mainstream society through public awareness, research and patient programs.

CEADE represents and speaks for several patient spondyloarthritis associations, defending their rights until they achieve full integration into society. Member Associations are the tools to enable spondylitis patients to meet their needs and ambitions. The coordinator is present in decision-making and projection of joint work with medical societies, laboratories and the population with these conditions.

SWITZERLAND

SWISS ASSOCIATION OF ANKYLOSING SPONDYLITIS

+41 44 272 78 66

http://www.bechterew.ch/

The Swiss Association of Ankylosing Spondylitis (SVMB) was founded in 1978 by AS patients. The Association advises, supports and connects people with AS and organises exercise classes and seminars throughout the country. It informs patients and their relatives about AS and puts the topic on the public agenda. The Association is part of a network of other patients’ organisations and supports research in connection with AS. SVMB has approximately 4000 members.

UK

NATIONAL ANKYLOSING SPONDYLITIS SOCIETY (NASS)

+44 20 8741 1515

http://nass.co.uk/

NASS is the only UK registered charity dedicated to ankylosing spondylitis (AS). More than 200,000 people in the UK have AS. They're fighting to improve treatment and care to help people with AS take control of their lives. And with your support, they’re funding research to help beat AS. NASS provide support, advice and information to people with AS. They are committed to keeping people as informed as possible about AS. They believe that people who understand their AS and how it should be managed will have the best possible outcome.

USA

SPONDYLITIS ASSOCIATION OF AMERICA (SAA)

1-818-892-1616

(800) 777-8189 Hotline

http://www.spondylitis.org/

The Spondylitis Association of America (SAA) is a nonprofit organization founded in 1983 to address the needs of people affected by spondyloarthritis. Since that time, SAA has been at the forefront of the fight to promote medical research, educate both the medical community and general public and advocate on behalf of the people we serve.

SAA receives no government funding and relies on the generous donations from individuals to create and maintain the programs and services aimed at improving the futures of the 2.7 million Americans affected by spondyloarthritis.

SAA is committed to fiscal accountability and transparency at all times and is consistently rated at the top of the scales by nonprofit watchdog groups and charity evaluators.

But what sets us apart from other organizations is more than our efficiency and work ethic; it’s the people who work with us to achieve our goals. From our small staff of dedicated professionals at our Van Nuys, CA headquarters to our all-volunteer Board of Directors to our internationally recognized Medical & Scientific Advisory Board, SAA is comprised of a lean group of dedicated experts whose aim is to change the landscape of spondyloarthritis in the US for the better.

Novartis AG have provided third-party links for the benefit of its users. They are not formally affiliated with any of the listed organizations on this website. As such, the Patient Support Groups listed should not be viewed as partners, affiliates or considered to endorse any of the current or future content found on thisaslife.com or the products and services provided by Novartis AG.

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