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Featured Communities
Browse our curated list of patient advocacy groups and support networks making a difference today.
Baggy Trousers UK
<p>Baggy Trousers UK is a non-profit organisation saving lives by raising awareness of the signs and symptoms and providing vital support to those impacted by testicular cancer</p> Contact page for Baggy Trousers UK, a registered charity in England and Wales focused on Testicular Cancer Awareness. The site features a contact form, donation prompt, and social media channels. Charity No. 1160724. Baggy Trousers UK is a cancer charity based in the North West of England founded by Jack Broadley in 2014. Its aims are to (1) promote and protect the physical and mental health of sufferers of testicular cancer, (2) provide financial assistance, support, education and practical advice to those affected by testicular cancer, and (3) advance the education of the general public in all areas relating to testicular cancer. The organization delivers awareness talks and showcases awareness exhibitions/stands in public and corporate settings, distributing self-help materials (leaflets, posters and step-by-step checking cards). It provides financial and peer support to men directly affected by testicular cancer via telephone, email, social media and a monthly peer support group. Primary contact support includes a phone line and email for peer support, and the charity runs a monthly peer support group.
Batten Disease Family Association
The BDFA’s mission is to enable everyone who is affected by Batten disease to live life to the full and secure the care and support they need until we find a cure. The BDFA offers informed guidance and supports families and professionals who work with them as well as actively increasing awareness of the disease and funding future research to identify potential therapies and ultimately a range of cures. The BDFA works across the rare disease sector to influence change in policy and processes as a collective voice.
Aplastic Anemia & Myelodysplasia Association of Canada
AAMAC funds research into bone marrow failure diseases such as aplastic anemia, PNH and MDS. The organization provides peer-to-peer support via telephone and email, educational materials, quarterly newsletters, and local support group meetings in various cities including Ottawa, London, Hamilton, Edmonton, Quebec, and Toronto. They also offer resources such as presentations, newsletters, articles, and emergency room cards. The organization is involved in clinical trials, with current trials conducted at Juravinski Cancer Centre, Princess Margaret Hospital, and Odette Cancer Centre. They engage in advocacy activities, provide patient education, and maintain a website with extensive resources.
Maggie's
Maggie's provides free cancer support and information in centres across the UK and online. They offer professional staff, help with money worries, support for friends and family, support groups, courses and workshops, and resources for managing emotions, practical challenges, symptoms and side effects, and social aspects of living with cancer. They also provide specific support for carers and those dealing with bereavement. Their services aim to help people live well with cancer. Maggie's is a cancer support organization providing free support services to individuals affected by cancer, including children, young people, and their families. They offer individual support, family support, support groups, psychology sessions, and signposting to other organizations. Their services are available at Maggie's centres across the UK and internationally. They also provide educational resources, advocacy activities, and community engagement. Maggie's is committed to supporting children and young people affected by cancer, offering tailored support and resources for teachers and group leaders. The organization is based in Glasgow, Scotland, and operates in multiple countries. It was established in 1995. Maggie's is a registered charity in Scotland with charity number SC024414.
Pembe Hanım
LL HakkımızdaKanser Toplumsal Bir SorundurPembe Hanım Kanserli hasta ve hasta yakınları tarafından kurulmuş, ticari amaç gütmeyen tam bağımsız bir sivil toplum kuruluşudur. Bir hasta derneği olan PH sağlık politikalarında hastaların sesini olmakta, kanser politikalarının oluşturulmasına katkıda bulunmaktadır. Bir Ulusal Kanser Enstitüsü kurulmasını hedefleyen, bilgiye erişimi önemseyen PH kanser hasta ve yakınlarına moral destek vermektedir.MisyonKanser hastası ve yakınlarının bilgiye erişimini sağlamak,moral destek vermek, yaşam kalitesini yükseltmek ve kanserin iyileşebilir bir hastalık olduğunu anlatmak.VizyonKanser hasta hakları savunuculuğu yapmak, sağlık politikalarında etkili olmak, kanser hastasını sorunların çözümünde ve sağlık politikalarında çözüm ortağı yapmak
The Aarskog Foundation
The Aarskog Foundation is a global alliance of people living with Aarskog Syndrome (AS) X-Linked inherited. The Aarskog Foundation brings together National and International Aarskog Syndrome patients from around the world to create a global alliance of patients and families faced with common challenges derived from the uniqueness of this RARE Genetic condition. Addressing Aarskog Syndrome is vital in order for it to be recognised as a disability across all governing bodies to ensure all Aarskog patients have access to the same resources as any other person. Patients living with Aarskog Syndrome come together through The Aarskog Foundation in a structured environment to create an Aarskog community and a voice through advocacy and exchange experiences. To this end we aim to unite, expand and put Aarskog Syndrome on the agenda of organisations and institutions both in the UK and across the world.
The Power of Community
Navigating a health condition is easier when you have the right support. Here's what you can find.
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Advocacy & Awareness
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