Helping patients find information when they are discovering their disease
Join our members in finding the resources and support you need to navigate your health journey.
Featured Support Groups
Connect with these highly rated patient advocacy groups that are making a difference in their communities
Rare Disease UK
We work on a variety of issues that families and individuals with genetic conditions face. We aim to provide information, support families and influence the services needed by these patients. We also work to add patient voice into debates that matter to our community. Our work falls into different categories: reproductive techniques, diagnosis, medical research, healthcare and delivery, access to treatments and living and education.
Pancan
The Pancreatic Cancer Action Network is a United States-based 501 charity that funds research, provides patient/caregiver support, conducts community outreach and advocates for increased federal research funding for those affected by pancreatic cancer.
TAPS Support Foundation
The TAPS Support Foundation is a registered charity dedicated to changing the way monochorionic twin pregnancies are diagnosed, handled, and treated, as well as raising the profile of Twin Anemia Polycythemia Sequence (TAPS).
Acute Leukemia Advocates Network (ALAN)
The [Acute Leukemia Advocates Network](https://acuteleuk.org/wp-content/uploads/2022/12/flyer_alan.pdf) (ALAN) is an independent global network of patient organisations, dedicated to changing outcomes of patients with acute leukemias by strengthening patient advocacy in that area. We aim to maximise the capacity of members within the network to allow us, together, to deliver tailored services to acute leukemia patients and carers on the national level. All whilst joining forces between organisations on the policy and research level across countries. ALAN is hosted under the umbrella of the [Leukemia Patient Advocates Foundation](https://www.lepaf.org/) (LePAF), a patient-led non-profit foundation based in Switzerland. As a foundation we connect leukemia patient organizations on all continents to strengthen advocacy work. The mission is to improve the lives and survival of patients affected by leukemia as well as their relatives by supporting leaders in providing help and support. ## OUR AIMS - Develop patient information and specific support for patients with acute leukemias and their carers in all countries - Strengthen patient organisations by sharing best practices and providing toolkits in patient advocacy - Create awareness about acute leukemias and how to better support leukemia patients - Advocate for better treatment, care & access to healthcare services - Improve education for healthcare professionals serving leukemia patients - Collaborate with other initiatives and stakeholders with similar goals
HBA Support
We are a new and growing, patient-focused organisation. Hereditary Brain Aneurysm Support (HBA Support) aims to support and inform people and families living with familial brain aneurysms or those who may be at risk. We will also raise awareness of the condition as a rare condition to improve and save lives. Working with families and clinicians alike, we will help advocate for improved support, better care and more research into this hereditary condition. HBA Support was set up in 2020 by Rebecca and Emma Middleton. After losing their mum and grandmother to brain aneurysms, Rebecca went through her own battle for diagnosis and subsequent treatment for a right MCA brain aneurysm.
PIP UK
There are many children born in the UK and across the world with a rare syndrome called Poland Syndrome. Very little is known about Poland Syndrome and it’s hard to find the right people in the know in the medical community. At PIP-UK we want to change this situation and make sure people get access to the right information for them, at the right time! Our blog has videos on all sorts of things like how to tie shoelaces. There are stories which demonstrate that Poland Syndrome should not hold you back from anything!