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Experiences with
Primary progressive multiple sclerosis
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Communities
27 public communities
My MSAA Community
9,019 members
The Multiple Sclerosis Association of America (MSAA) is a nonprofit organization improving lives today for the MS community through our vital services and support. We provide direct services and ongoing support to individuals with MS, their families, and their care partners throughout the United States. Some of our free services include: Helpline with trained specialists, safety and mobility equipment distribution, award-winning educational videos and publications, cooling accessories for heat-sensitive individuals, educational programs held across the US, and more. We hope that My MSAA Community on HealthUnlocked is a safe and inviting space for you to connect with other members of the MS community in order to both find and provide support for your shared experiences.
Myeloma Warriors
144 members
Myeloma Warriors is a great community for people living with Multiple Myeloma. Join us today, share your experiences, connect with others like you and support one another.
Neuro Support
1,949 members
Welcome to the Neuro Support Community. This community exists to improve the quality of life of people affected by any neurological condition, including: ALS, Alzheimer’s disease, Back pain, Bell's palsy, birth defects of the brain and spinal cord, brain aneurysm, brain injury, brain tumors, cerebral palsy, chronic fatigue syndrome, concussion, dementia, disk disease of neck and lower back, epilepsy, Guillain-Barré syndrome, migraine, multiple sclerosis, muscular dystrophy, neuralgia, neuropathy, neuromuscular and related diseases, Parkinson's disease, scoliosis, seizures, spinal cord injury, spinal deformity, spinal disorder, spine tumors and stroke. Whether you're affected directly, caring for someone or know someone affected, everyone is welcome. Join today to share your experiences, receive support and exchange advise in a community of people who truly understand. Introduce yourself today: https://healthunlocked.com/neuro-support/write
PCD Family Support Group (UK)
609 members
This volunteer-run group supports patients and families affected by Primary Ciliary Dyskinesia (PCD) in the UK. Any advice given is from a personal perspective. For medical advice please consult your clinicians.
Multiple System Atrophy Trust
1,640 members
The Multiple System Atrophy Trust is the only charity in the UK and Ireland that provides information and support to people affected by Multiple System Atrophy (MSA). We do this through a number of ways including our three MSA Nurse Specialists, a network of Support Groups, information resources and our MSA News magazine. We also provide funding towards research projects and small grants to our members. We are entirely funded by voluntary donations. Share your stories, ask questions and support one another!
PBCers Organization
1,400 members
PBCers Organization is a community dedicated to providing reliable primary biliary cholangitis (PBC) information and offer support to its members. Topics discussed include symptoms, medication, diet, personal experiences, transplant and anything else PBC related.
PSP Association
9,266 members
PSPA is a national charity offering information, practical and emotional support to people affected by Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD), while supporting research into treatments for the future. Our aim is that people affected by PSP & CBD do not feel they have to face the future alone. We offer support through our helpline and information service via telephone or email, our network of local groups and volunteers. We also offer a wide range of resources and publications. As well as events for people affected by both conditions. If you require information or support contact our confidential helpline and email service Monday to Friday 9am- 9pm. Tele: 0300 0110 122 Email: helpline@pspassociation.org.uk
LDN Research Trust
1,382 members
The primary aim of the Trust is to initiate Clinical Trials of Low Dose Naltrexone. Whilst working to raise funds for trials, we have helped over 16,000 people to obtain LDN from a General Practitioner or Neurologist, either through the National Health Service or by private prescription. We have also been able to help people, not just in the UK but in countries throughout Europe, as well as USA, Canada, West Indies, Australia, New Zealand, and others. By using this website and from our downloadable newsletters, you will be able to read the stories of some of these people. We have helped many people with MS, Crohn's, IBS, ME and Cancer to name a few. The use of LDN is spreading. Our ultimate goal is for everyone to be prescribed LDN globally for all conditions where LDN could be of benefit
MS Society
579 members
We're the MS Society, we're a community of people living with or affected by MS. Whether you have MS, or care about someone who does, our community is here for you through the highs, lows and everything in between. If you have any questions, don't hesitate to reach out to anyone of our admins listed below.
PBC Foundation
9,391 members
The PBC Foundation hosts this community to provide support and information to those affected by Primary Biliary Cholangitis - an autoimmune condition that affects the liver. The PBC Foundation is the UK's only, and world's largest, organisation that specifically deals with PBC with registered service users in over 84 countries. We lead the world in PBC in advocacy, support and in providing services such as self-management tools, of which this forum is just one. If you wish to become a registered service user with the PBC Foundation, please visit our website www.pbcfoundation.org.uk and follow the registration process or alternatively please call our office +44 131 556 6811 and we can send out our registration pack free of charge. The current benefits of membership include: ~ free interactive self-management App ~ exclusive content on website, including videos ~ quarterly magazine full of the latest PBC news, including news of upcoming trials, latest research, etc
Blue Faery Liver Cancer
611 members
Blue Faery’s mission is to prevent, treat and cure primary liver cancer, specifically Hepatocellular Carcinoma (HCC), through research, education and advocacy. Our Liver Cancer Community is our online, private forum for HCC patients and caregivers. Blue Faery is a 501(c)(3) national nonprofit organization with offices in Burbank, California and Birmingham, Alabama.
Living Positively with Cerebral Palsy
461 members
I have Cerebral Palsy. I have had it since birth. I'm adult now. What I have found is that there is a lot of information out there for parents who have children with Cerebral Palsy. However, there is not a lot of support and information for adults with the condition. This is bad because Cerebral Palsy is treated like a childhood condition. This is surprising as it is not a progressive condition. People with Cerebral Palsy do not fall off the face of the earth when they hit eighteen years old. 1 in every 400 children are affected by cerebral palsy. These children will have this chronic condition for life. So if you want to share your experiences of Cerebral Palsy in adulthood. This is the place to do it. Connect with others who understand your situation!
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