This Photo from Ben’s Friends 2019 Awareness Event is a practical example of the power of Rare Disease Patients working together. In this case it was everyone paddling hard to keep the raft from flipping over in Class 3 rapids.
Every day, in every Ben’s Friends community
members work together to prove that
We have Rare Disease, but
Rare Disease doesn’t have us.
Join us Today..
POWERED BY: BEN'S FRIENDS Our Story
Living With Psoriatic Arthritis
LivingWithPsoriaticArthritis.org is a dedicated patient-to-patient support community for families affected by Psoriatic Arthritis. LivingWithPsoriaticArthritis.org is powered by BensFriends.org patient support communities for rare diseases, and is run by volunteer moderators who have been affected with Psoriatic Arthritis and is free for members to join. If your family has been affected by Psoriatic Arthritis, consider Living With Psoriatic Arthritis. your second home.
Psoriatic Arthritis (PsA) is a type of inflammatory arthritis which affects people who suffer from the chronic skin condition, psoriasis. Common symptoms of psoriatic arthritis include pain, swelling, or stiffness in one or more joints that are red or warm to the touch.
Persons with psoriatic arthritis also experience pain in and around the feet and ankles, especially tendonitis in the Achilles tendon or Plantar fasciitis in the sole of the foot and in the area of the Sacrum (the lower back, above the tailbone). Changes to the nails, such as pitting or separation from the nail bed also occurs.
Our mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them. Ben’s Friends is a network of safe and supportive patient communities for anyone affected by a rare disease or chronic condition.
Recognized as a 501©(3) non-profit, Ben’s Friends is a grassroots organization run by patients for patients. It is a community offering peer to peer support. The value of this approach is evidenced by our hundred volunteer moderators, who are either patients themselves or relatives of patients, who believe in the mission and are willing to invest their time and share the knowledge and insights they have gained with members arriving daily in need of help. Ben’s Friends considers the patient perspective in everything we do.
In 2007, Ben Muñoz suffered a rare form of stroke caused by an AVM. He was unable to find the support he needed during the most difficult time, so his friends created an online support community AVMSurvivors.org to connect with others like him. This lead to the founding of BensFriends.org driven to provide patient-to-patient support communities for people living with rare diseases.
Why Rare Disease
Global Genes reports that 350 million people worldwide suffer from a rare disease, with an estimated 30 million in the U.S. and an additional 30 million in Europe. So, while each separate disease is rare, being a rare disease patient is not. In fact, 10% of the population in the U.S. is living with a rare disease. There are over 7,000 types of rare diseases, from the extremely rare (only a few documented cases worldwide) to the “common” rare diseases (about 350 conditions, covering 85% of rare disease patients).
When factoring in patients with chronic conditions, which may need the same type of emotional support and community fellowship as rare disease patients, the demand for online patient support communities is limitless and bounded only by our own resource constraints and capacity.
Our Butterfly logo is a fitting symbol for our support communities, as it denotes rebirth, transformation and gentleness. Our communities offer a way of helping each other move forward with positivity during the difficult transformation that illness can bring
Help Our Cause
Support the Rare Disease Cause.
A donation of only $25 will make a big difference!
Your $25 donation will provide a Ben’s Friends member with peer-to-peer support for one year.
Donate for yourself, or pay it forward for others with rare disease.