Looking for rare disease advocates for a podcast....I have a podcast called Rare Connection. I am trying to connect rare disease patients with others with the same or similar conditions with it, educate medical professionals and the...Reactions0reactionsComments1 replies
Road to NMOSD...In 2009 I began having more symptoms of blurred vision, double vision, back pain, leg pain Iretractable vomiting, nausea, hiccuping,walking became impaired. I went to ER. UTI and stomach pain...Reactions0reactionsComments2 replies
Benefits of Taking an Advocacy Break...Since becoming a rare disease mom, I have been relentlessly dedicated and solidly committed. However, more so now than ever, I have found a crucial need to pause and refresh... By Alex Gaudlap2 min readBookmark for laterReactions0reactionsComments5 comments
My First Rare Disease Conference...Recently, I had the opportunity to attend a national conference for the rare disease that is narcolepsy. This conference had a plethora of people attending, including people with narcolepsy (such... By Tatiana Corbitt2 min readBookmark for laterReactions0reactionsComments2 comments
Medical Mystery - Can anybody help? ...My current symptoms: Extreme fatigue and tiredness throughout the entire day Dissociation / feeling of faintness Extreme mental fatigue and brain fog Trouble concentrating and poor memory This all started...Reactions0reactionsComments3 repliesDiagnosisSymptoms
Grappling With the Possibility of Having Another Rare Disease...My mother has the same rare diseases that I have and among her many chronic health conditions, she also has worsening vision issues. She was ultimately diagnosed with retinal dystrophy... By Jenny Jones3 min readBookmark for laterReactions0reactionsComments2 comments
Parenting a Child With a Rare Disease and Reflecting on the Power of Pause...The day my precious daughter was diagnosed with a rare disease is recorded in my heart, forever reminding me of a story filled with love, resilience, and the transformative power... By Elle Cole6 min readBookmark for laterReactions0reactionsComments3 comments
Long time to diagnosis ...I had symptoms with Bechets when I was 10 yrs old hospitalized with terrible mouth sores and pain. From abused home. No support never Complained again . Continuing symptoms terrible...Reactions0reactionsComments2 replies
Dont know...My wife has igg4-- retroperitoneal fibrosis -- autoimmune disease. She has a lot of things wrong with her. She takes over 40 pills aday. I have no one to talk...Reactions0reactionsComments1 repliesCaregiving
Life as the Primary Caregiver: Insights from a Rare Mom...In the rare disease space, a full-time caregiver of someone with a rare disease has a unique mindset. There is often compassion, love, and unwavering dedication to make sure that their... By Alex Gaudlap2 min readBookmark for laterReactions0reactionsComments0 comments
How My Therapist's Questions Help Me Manage Medical Trauma...As a person with a history of medical trauma related to my rare diseases, sometimes I put expectations on myself that are unrealistic or harmful. To help me reevaluate my... By Jenny Jones3 min readBookmark for laterReactions0reactionsComments7 comments
When You Don’t Want Advice on Your Rare Disease...How many times have you had to sit and listen to someone give you advice on living with your rare disease? Probably a lot! From doctors to family members to... By Tatiana Corbitt3 min readBookmark for laterReactions0reactionsComments3 comments
Extremely rare and ambiguous medical case....Greetings everyone, i hope you are all doing well. Time and energy are a luxury that unfortunately i can’t afford anymore matter of fact i am using whats left of...Reactions0reactionsComments2 repliesDiagnosis
Community Conversations: Sharing Our Experiences With Rare Diseases...Every rare disease journey is unique, but we have found here at RareDisease.net that our members have shared experiences. From difficult diagnoses to dealing with treatment and insurance barriers, our... By RareDisease.net Team2 min readBookmark for laterReactions0reactionsComments0 comments
Looking for board members for a nonprofit...I have a podcast called rare connection, I am trying to turn it into a nonprofit. With my podcast I am connecting people with the same or similar conditions, educating...Reactions0reactionsComments18 replies
Undiagnosed insane symptoms...1st time here. I desperately need help as to why I go numb and loss bodily function and become extremely dizzy if I don't have constant heat on me when...Reactions0reactionsComments14 repliesDiagnosis
Sponsored: Let Your Voice Be Heard and Help Raise Awareness of Myositis...By argenxLiving with myositis is full of challenges. From numerous doctor appointments to managing symptoms and finding a treatment that’s right for you, it can feel overwhelming at times. You...
Caring for a Child With a Rare Disease: Vacations? What Are They?...As parents, we cherish the moments when we can create lasting memories with our children, especially during vacations. However, for those of us with medically complex children, like me, the... By Alex Gaudlap3 min readBookmark for laterReactions0reactionsComments1 comments
What to Know About Support Groups...Support groups are a resource and outlet commonly recommended for navigating and coping with an identified life stressor such as a rare disease, a specific health condition, or even mental... By Jenny Jones4 min readBookmark for laterReactions0reactionsComments4 comments
FDA Approves Gene Therapy: A Rare Disease Parent Advocate Reflects on Hope and Challenges Ahead...Today, I want to share with you the mix of emotions that have flooded my heart as a 15-year rare disease parent advocate. On December 8, 2023, the FDA approved... By Elle Cole4 min readBookmark for laterReactions0reactionsComments3 comments
