BensFriends.org

BensFriends.org

Patient Communities for People with Rare Diseases

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BensFriends.org

BensFriends.org

Patient Communities for People with Rare Diseases

  • Our Story
    • Mission
    • History
    • Team
    • Partners
    • Contact
    • Press Kit
  • Our Communities
    • Community List
    • Why Join?
    • Contribute
    • What Patients Say
  • Get Involved
    • DONATE
    • Dedicate A Gift
    • Internship
    • Volunteer
    • Shop CafePress
    • Contact Us
  • Resources
    • Patient Resources
    • Newsletters
    • Get-Connected
  • Donate
    • Donate
    • Dedicate A Gift
    • Donation FAQ’s
    • Thank You, Donors
  • News
    • Blog
    • Press Releases
  • Donate Now

Author: Rose Andrade

LivingwithAddisons.org: 4 Things to know to help a friend living with Addison’s Disease

June 21, 2023Rose Andrade

Addison’s Disease is a rare autoimmune condition which attacks the adrenal glands and causes insufficient production of aldosterone and the stress hormone cortisol.  This then results in problems regulating salt…

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Foot and Float to Build 10 New Communities

August 9, 2019Rose Andrade

Ten Ben’s Friends Members and Friends are traveling to Glacier National Park This August for five active days to prove rare Disease Can’t stop - us not on Land or…

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2018 Ben’s Friends Community Network Update

February 6, 2019Rose Andrade

The following new communities were started in 2018, many of which represent co-conditions that occur with Rare Diseases already supported by Ben's Friends Patient communities and may be of interest…

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Ben Munoz Joins Antidote Rare Disease Conversation

July 24, 2017Rose Andrade

Antidote, a digital health company who aims to accelerate the development of breakthroughs treatments, making medical research accessible to all, held a roundtable discussion named, "How are Rare Diseases Treated?:…

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Ben’s Friends Newsletter November 2016

November 5, 2016Rose Andrade

     MESSAGE FROM BEN Hi, everyone, I hope this message finds you and your loved ones well.   Ben’s Friends Patient Communities was founded in 2007; I had just…

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BioBlast Matches Up To $5,000 In Donations To Help Build A New Home For Ben’s Friends

December 16, 2015Rose Andrade

BioBlast Pharma will match each dollar up to $5,000 donated to Ben’s Friends for the migration of the Oculopharyngeal Muscular Dystrophy (OPMD) and Spinocerebellar Ataxia Type 3 (SCA3) patient communities…

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CMX Hub Features Ben’s Friends

October 11, 2015Rose Andrade

Ben’s Friends co-founder Ben Munoz shared in CMX Hub how to build trust from patients with rare diseases. According to Munoz, making members feel welcomed is key. The welcome is…

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95% of Rare Diseases have No Drug or Therapy

September 17, 2015Rose Andrade

Rare disease “affect more people than the biggest headline-grabbing diseases on the planet.” View this infographic produced by CrowdMed to see the stats: The Epidemic No One Is Talking About:…

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Is the Price of Generic Drugs in the US Going Up?

September 17, 2015Rose Andrade

A 1000% price hike in the cost of generic drugs? Can that be true? According to this recent article from the AARP Public Policy Institute (PPI), 27% of the generic…

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How Can I Help?

September 15, 2015Rose Andrade

Thanks for your interest in making a difference. On behalf of anyone living with a rare disease, we thank you. Ben's Friends is a 501(c)(3) non-profit, and your donations is…

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Our Patient Support Communities

Join Our Safe and Supportive Patient Community


Acute Disseminated Encephalomyelitis (ADEM)
Addison's Disease
ADHD/ADD
Adrenoleukodystrophy (ALD)
Amyloidosis
Arteriovenous Malformation (AVM)
Ataxia (International)
Atrial Septal Defect
Brain Aneurysms
Caregiver Support Community (FB)
Charcot Marie Tooth (CMT)
Chiari Malformation
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)
Crohn's Disease
Eagle Syndrome
Ehlers-Danlos Syndrome
Erythromelalgia
Fibromyalgia
Glossopharyngeal Neuralgia (GPN)
Guillain-Barre Syndrome (GBS)
Lupus
Lyme Disease
Mast Cell Disorder
Multiple Myeloma
Myositis
Narcolepsy
Oculopharyngeal Muscular Dystrophy
Primary Sclerosing Cholangitis (PSC)
Psoriatic Arthritis (PsA)
Sjogren's Syndrome
Synovial Sarcoma
Trigeminal Neuralgia (TN)
Traumatic Brain Injury (TBI)
Von Willebrand's Disease (VWD)

Don't see your condition? Please visit this link.
Contact us @ info@bensfriends.org

Are you in crisis? Please call 1-800-273-TALK

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