Posts by: Mary Chapman

News, syndicated

Same But Different, a nonprofit U.K. group that uses art for social change, is inviting people to choose their favorite photographs in a calendar contest to heighten awareness of rare ... Read more

September 25, 2020September 25, 2020

How to Talk to Your Doctor About XLH

Health Insights

If you have a doctor who is knowledgeable about X-linked hypophosphatemia (XLH), you should make the most of your visits, particularly in the weeks and months following your diagnosis. ... Read more

September 5, 2020September 5, 2020

Raising Awareness About XLH

Health Insights

The symptoms of X-linked hypophosphatemia (XLH), including weak bones and muscles and pain, make life challenging for both patients and their caregivers. Often adding to those difficulties is a ... Read more

August 27, 2020August 27, 2020

IOF’s ‘Skeletal Rare Diseases Academy’ Spreads Word About Bone Disease

News

The International Osteoporosis Foundation (IOF) has launched a global initiative to increase awareness and understanding of rare skeletal diseases such as X-linked hypophosphatemia (XLH). Called the IOF Skeletal Rare Diseases Academy, ... Read more

August 17, 2020August 17, 2020

EveryLife Foundation Launches Scholarship Fund for Rare Disease Community in US

News, syndicated

The EveryLife Foundation for Rare Diseases has launched a scholarship fund in the U.S. to support individuals with rare disorders who are pursuing personal goals through training and education. ... Read more

July 31, 2020July 31, 2020

About BeyondXLH

Health Insights

If you or your child have X-linked hypophosphatemia (XLH), you might want to consider enrolling in the online disease-monitoring program BeyondXLH. Because XLH is so rare, and its symptoms can ... Read more

June 26, 2020June 26, 2020

Clinical Trials for XLH

Health Insights

There currently is no cure for X-linked hypophosphatemia (XLH) and not many options for treating the disease’s symptoms. That’s why clinical trials are so important as scientists work to develop ... Read more

June 19, 2020June 19, 2020

Planning for the Future When You Have a Child With XLH

Health Insights

Caring for a child with X-linked hypophosphatemia (XLH) can be overwhelming. Worrying about what might happen if your child outlives you, or you become disabled, can be stressful. Here ... Read more

June 5, 2020June 5, 2020

Spoon Theory for XLH Caregivers

Health Insights

Caring for a child who has X-linked hypophosphatemia (XLH) can be draining. You’re dealing with a rare disease characterized by weakened bones and teeth, possible fractures and dental abscesses, muscle ... Read more

May 15, 2020May 15, 2020

Tips for Staying Motivated with a Chronic Disease Like XLH

Health Insights

When you’re living with a rare and progressive disorder like X-linked hypophosphatemia (XLH), with its myriad of potential symptoms, you may find it difficult to stay motivated. Here are some ... Read more

Posts by: Mary Chapman

Mary Chapman

Same But Different Asks Public to Vote on ‘Glimmer of Hope’ Calendar Photos

How to Talk to Your Doctor About XLH

Raising Awareness About XLH

IOF’s ‘Skeletal Rare Diseases Academy’ Spreads Word About Bone Disease

EveryLife Foundation Launches Scholarship Fund for Rare Disease Community in US

About BeyondXLH

Clinical Trials for XLH

Planning for the Future When You Have a Child With XLH

Spoon Theory for XLH Caregivers

Tips for Staying Motivated with a Chronic Disease Like XLH

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