what are some tips for managing rar disease?

Early Diagnosis: First and foremost, it's crucial to get a proper diagnosis as early as possible. Due to the rarity of the disease, it might take longer than usual. Consulting with specialists in the field, such as geneticists or immunologists, may expedite the diagnosis process.

Follow the Treatment Plan: Management of a rare disease often requires following a specialized treatment plan. This may include medication, therapy (physical, occupational, speech, etc.), and lifestyle modifications. Make sure to adhere to this plan and regularly follow up with your health care provider.

Regular Monitoring: Regular check-ups and tests are important to monitor the progression of the disease and adjust the treatment as necessary.