Annexon Biosciences’ Post

On May 30, we support #MS patients in their journey to live better with MS. Multiple Sclerosis is a chronic autoimmune degenerative disease that affects the central nervous system, causing wide array of disability symptoms. While it affects young people and the prevalence in the Middle East is on arise reaching 61.95/100,000, it can be accommodated and well-managed by the proper awareness, early diagnosis and maintained treatment. #MSday #LivewithMS #Glanza

🌎 Today is World Juvenile Arthritis Day! 🧒 JA is a chronic autoimmune disease that can cause pain, stiffness, swelling, and limitation of movement in children. Despite its prevalence, JA is often misunderstood. Why spreading awareness matters: - Early diagnosis and treatment are crucial for managing JIA and improving long-term outcomes for children. - Increased awareness can help reduce the stigma and isolation JIA patients may face. - By understanding JIA, we can better support the research efforts needed to find a cure. For more info - https://lnkd.in/egbVvZGD

A common symptom for people living with Charcot-Marie-Tooth disease (CMT) is neuropathic pain. According to Brian Callaghan, MD, roughly 80% of CMT patients experience neuropathic pain with their CMT. The Charcot-Marie-Tooth Association’s #CMTStrikesANerve is a campaign to raise awareness about CMT-related neuropathic pain and its debilitating effects. CMTA needs your support to accelerate the research to bring treatments and a cure for CMT. Ending CMT means ending chronic life-changing pain.

Today, on this exceptional day that only graces our calendars once every four years, we commemorate Rare Disease Day. It's a day to shine a light on the challenges faced by those living with rare diseases, their families, and caregivers.   One of the challenges faced by those with rare diseases is the difficulty in obtaining a timely and accurate diagnosis. Due to the scarcity of information and expertise surrounding these conditions, diagnosis can be delayed or missed altogether. This delay not only prolongs suffering but also hinders access to appropriate treatments and support services. #RareDiseaseDay #Amgen #myCompany Indeed, even the most effective treatments are rendered ineffective without proper diagnosis. The example of Neuromyelitis Optica Spectrum Disorder (NMOSD) shows that the delay in diagnosis may range from five to seven years. It is important to educate patients and doctors as much as possible about diagnostic and therapeutic options. Together, let us strive to ensure that no one facing a rare disease feels alone or forgotten. 

95% of people living with Tumour-Induced Osteomalacia (TIO) are initially misdiagnosed with another bone disease, primarily due to a lack of awareness about #TIO and its non-specific symptoms. People living with TIO can often suffer from progressive and severe disabilities, meaning a timely diagnosis is critical. However, it typically takes between 2.5 and 3.5 years for people to receive the right diagnosis, with 80% of patients experiencing a delay of over two years following their initial onset of symptoms.  The need to shorten the diagnostic journey is clear, so please do share this post to help us improve awareness of TIO. 

It's #WorldAnkylosingSpondylitisDay! Today, we raise awareness about this chronic inflammatory disease affecting the spine. Ankylosing Spondylitis (AS) can cause: Pain and stiffness in the lower back and buttocks Difficulty moving or bending the spine Fatigue and joint pain in other areas Early diagnosis and treatment are crucial for managing AS effectively. Let's work together to: Support those living with AS. Advocate for more research to find a cure. Break down the stigma surrounding chronic illness. #ChronicIllnessAwareness #YouAreNotAlone #keepmoving #clinicaltrials #clinicalresearch #spinehealth

Two of the most common questions being asked by patients today are: What are the main symptoms of MASLD? How is MASLD diagnosed? This summary blog review may be of interest to those wanting to learn more about these 2 areas of concern, especially because MASLD may be a new term that they may not have heard.

Submit your #RareDiseaseTruth now through the end of the day tomorrow, Wednesday, Feb 28, to [email protected] to be highlighted across our social media. Must include: 1) One photo of your choice 2) Age 3) Location 4) Name to be used 5) Relationship to ALGS patient or whether you are the patient (can be relative, friend, coworker, doctor, scientist, industry member, etc, if not the patient or caregiver) 6) An answer to ONE of these questions: A. What do you wish people understood about Alagille Syndrome? B. What is the hardest part about living with the rare disease, Alagille Syndrome? C. What encouragement could you offer to a patient or family facing a new diagnosis of Alagille Syndrome or going through a tough time?

Spinal Cavernoma - Is a vascular malformation, within the spinal cord. ‘The spinal cord is believed to be the rarest location for a cavernoma to develop.’ Symptoms are caused by injury to the nerves in the spinal cord. and are related to what the spinal cord normally does. Symptoms may include; ⁍ Weakness in the hands or legs ⁍ Sensory problems – pins and needles, numbness, and/or problems with balance ⁍ Pain ⁍ Bladder and/or bowel dysfunction ❔What to find out more 👇 See the Spinal Cavernoma booklet, by Cavernoma Alliance UK https://lnkd.in/e7bVikAN More info can be found on the following 'Alliance to Cure Cavernous Malformation's website page; https://lnkd.in/eNnUfv9p #CavernomaAwarenessMonth #HopeForACure #StopCavernoma #SpinalCavernoma #SpinalInjury #Cavernoma #InternationalCavernomaAwareness #CavernousMalformation #Angioma #SCCM Rare Ireland #RareDiseasesIreland Northern Ireland Rare Disease Partnership (NIRDP) Spinal Injuries Ireland

Dear Colleagues, The American Journal of Case Reports has highlighted a case linking COVID-19 to Graves' disease, an autoimmune disorder affecting the thyroid. This 42-year-old woman presented with an impending thyroid storm 3 weeks after a COVID-19 diagnosis. Symptoms included hyperthyroidism, eye pressure, confusion, palpitations, and goiter. Treatment involved medications and ultimately a thyroidectomy. Recognizing COVID-19 as a potential cause or trigger for GD is crucial for early diagnosis and treatment. The full article is available on the American Journal of Case Reports webpage. #COVID19 #GravesDisease #ThyroidAbnormalities #MedicalResearch | https://lnkd.in/dZeWsk7p